Kyara Dzenis August 6,2004 - March 19,2010

Play Park Before

2011-09-27T14:45:00.000-04:00

This is the final week before the big build on the park in Griffin. This park is being built in a very poverty stricken section of the city. I went by the build site 2 weeks ago to see the site and if any progress had been made. First, let me say that I went alone, with Kassey. Yes, it was the middle of the day, plenty of sunlight, but I got a bit lost and wandered in some pretty desolate areas before I finally turned on the correct road. As I slowly started down the road, my heart rate started to increase and I could hear the thumping of each heartbeat. I had wanted to stop to take some "before" pictures, but as I looked around, I wasn't really sure where the lot was, and I didn't think it would be wise to stop the car, get out, and ask. Maybe this is not a very Christian thing, but I was a bit scared. There was a section between a couple of run-down homes that looked promising, except the area seemed to be a dumping ground. Beat-up sofas, tables, and trash littered the ground. I decided to keep going and to try again the following week.

This time, I had been informed that a crew had gone to the site and had begun to level the lot. Kassey and I packed up in the car again and headed out. As I cruised through the street this time, I noticed that noone was outside. The lot had been cleared and the trash had been cleaned up.

Head on shot of the build site.

View of the lot looking back up the road.

As you can see by the pictures, there is still a lot of work to be done on the site. This Saturday, Oct. 1, SquareFoot Ministry is holding a build day. We will begin at 8:00am and conclude around 6:00pm with a neighborhood dinner. You can learn more about the build at http://squarefootministry.com/Kyara%20Dzenis%20Park%20Build.html. If you live in the area and are able to volunteer on Saturday, you can sign-up at the build site on Saturday. If you don't live near here or are unable to volunteer on Saturday, please consider making a donation. The paypal site will direct you to a page so that you can make sure it goes towards this build. Most of all, we ask for prayers for the build to be successful. We have already seen God's hand at work in making this park a reality, and with our support we can make it a success.

Kyara loved to play. When I would ask her what she enjoyed most at school it was one of two things, either the playground or naptime! When she was in Pre-School, she loved to ride on the tire swing. Each day when I would ask about her day, it was centered around the playground. They were either on the "little playground" or on the "big playground." She LOVED the big playground, because that's where the tire swing was. She would tell me all about "her boyfriend" pushing her on the tire swing. I met this "boyfriend" of hers a couple of times, and I must say, he was quite the charmer! When I was approached about the park build, I thought it really encompassed Kyara and her joy. It is an amazing project that will bring laughter and fun to a place that was a bit scary for a grown woman to drive through. I can't wait to see how God uses this build to touch others' lives.

One thing that Kyara could not escape from, no matter if she wanted to or not, was soccer. She was born into a family that loves the sport, so from the time she was barely walking, she was around soccer. Good thing she loved to play, too. I was looking through some old pictures, and found some to share...

Sometimes the hardest part of soccer is not scoring the goal, but getting yourself out of the net after retrieving your ball!

Skylar and Kyara were best buddies and Kyara wanted to do everything her big sister was doing. Skylar, obviously loved being the big sister. What isn't shown is them both in a heap on the ground after Skylar hugged Kyara too hard and made them both fall!

These soccer pictures are from after the initial ingestion. Kyara didn't let the fact that she couldn't eat and had to use a G-Tube slow her down.

Look at that shielding technique. Arm out for feel, putting her body between her opponent and the ball, using her left foot to turn away from pressure...

This age group was so funny. You usually had one player on each team who understood the concept and took over, everyone else hung around watching or looking at the clouds. In this game, Kyara was "ON!" Memory doesn't quite serve me, but I think this is the one where she would run over to the sideline and yell "That's 1.... that's 2.... that's 3..." each time she scored. By goal 10 it was getting a bit embarrassing!

Even when it was cold outside, she had a smile on her face and a ball at her feet!

Have a blessed day!

Play Park

2011-09-17T00:38:00.000-04:00

Squarefoot Ministries is building a playground and community center in Griffin, Ga and have sweetly decided to do the build in memory of our angel, Kyara. I don't know how to express in words the emotions I have. I think it is amazing that Kyara continues to touch people's lives and that she is bringing peace, hope, and love to a poverty striken area. God is amazing with how He works through people. Squarefoot Ministries is an amazing organization, which is heavily involved in missionary outreach right here in our backyard. If you live in the area, please consider volunteering on October 1st to help build this park. If you do not live in the area, please consider donating to the organization.

The web address for more information is:

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.squarefootministry.com%2F&h=vAQDB70hBAQAIX7VGmll21uH9OkT7KsiSIr7Z7RkXWz17Sg

I have also pasted the information below:
The Build in Memory Of Kyara Dzenis

The Griffin Impact Community Center and Park

Date of Build: October 1, 2011

The Griffin Impact Center and Community Park will be located at 223 Kentucky Ave. in Griffin Georgia. This area on the north side of Griffin is a run down, extremely poor, troubled part of town. The center and park will serve as a beacon of hope and change for the area. The center will be used as a place of learning and outreach for the residents of the area. It will help them become more self sufficient, thereby helping each individual reach more of his/her potential. The park will serve as a place for children in the area to play in a safe clean environment

Impact Race Ministries and Square Foot Ministry are striving to make a difference right here by helping those who find themselves in need in our community

Below are some sobering statistics about this area.

• Average per capital income is less than $15,563.
• 23.5% live below the poverty level (9.8% are 50% below the poverty level)
• High school drop out rate is over 50%
• Unwed pregnancy rate (white –51% ) (African American – 68% )
• Unemployment rate is at 15.3%
The build is being dedicated in memory of Kyara Dzenis.

http://kyara-carepage.blogspot.com/

Join us for the final build day in Griffin Georgia for the final installation stages of the Community Park. This park and playground is being built in Griffin Georgia off Kentucky Ave. A large group of Churches and Civic organizations as well as other non-profits have come together to make this park a reality.
Work on the park will start at 8:00 A.M. and will take about 7 hours to complete. Work will included planting trees and bushes, pouring concrete for swings and climbing equipment and a picnic shelter. At 5:00 P.M. join us as we invited the neighbor to dinner. After a day's work, we all gather in the evening for fun, food.
The event is open to youth groups as well as individuals and there is not charge to participate.

To donate ,please make checks to Square Foot Ministry , P.O. Box 371, Fayetteville, Ga. 30214, mark checks for Kyara's Park. All donations are tax deductable.

Update on us: School is under way and it is crazy in our house! Skylar is playing soccer 4-5 times a week and Kassey is doing Karate and soccer! She is thrilled to finally have "her" soccer to go to. I am still going to school on Monday nights and helping coach Skylar's soccer team. Gunars is doing a great job at Georgia Pacific and is helping coach Kassey's soccer. We are busy and we are loving it!

Quick story: Kassey got herself dressed for school on Thursday. Everything looked good, we got hair brushed and off we go. No big deal, right? Well, AFTER school while we are in the grocery store, Kassey pulls her pants halfway down and informs me that she didn't wear panties to school! WOW! That is the last time I am going to let her dress herself without checking to make sure that she has EVERYTHING taken care of! Hahaha!

Have a great night, and thank you for keeping up with our family!

Happy Earth Birthday, Kyara!

2011-08-08T10:01:00.002-04:00

Seven. Kyara would have been seven on August 6th. Time flies. I think back to the many many times people would say to me when the girls were little... enjoy it, time flies and the next thing you know, they are moving out. Those words ring true in a different sense to me now. Enjoy the time we have, because you never know when they will be called home by God. Not that I won't see her again, I know I will... but it is such a LONG wait! I try to remind myself that in the scheme of ETERNITY, the next 60 years (give or take) is only a blink of an eye. Some days it works, and some days I just need to hold her, tell her how much I love her, and give her an Eskimo kiss, Butterfly kiss, and Mommy kiss (our old bedtime routine, which I still do with Skylar and Kassey).

This year for her birthday we went up to Hospice Atlanta to feed the families, visitors, and staff. I really appreciate the help of my brothers' families, my mother-in-law (Luz Estela), and Bunny and Pop for helping us get everything ready for the dinner. I am thankful that Gunars, Skylar, and Kassey help me get everything together and go up to the Hospice center with me, even though I know it is difficult for them to go there. Hospice Atlanta is a very peaceful center which provides end of life care for patients as well as support for their families. The work these individuals do is amazing. So, in celebration and rememberance of Kyara, we go up to serve them on her birthday. So many members of the family have not had a homecooked meal in days or weeks due to caring for their loved one. It is so nice to be able to provide a little food, comfort, a smile, and hopefully some sunshine to them. I would love to say we do this just for these families, but sometimes I think I need it, too. It makes me feel closer to ... I don't know what... Kyara? Jesus (serving others)? put me more in touch with my emotions? I don't really know, but it is a tradition I hope to continue.

First day, Kyara just a few minutes old

1st Birthday - Celebrated in Hawaii!

2nd Birthday - At Stone Mountain Park!

Kyara's Third Birthday won't upload for some reason, will try again later.

4th Birthday - The first day of school (Pre-K) was her birthday. Kyara loved school and was so excited to be in the "big girl school" with Skylar.

School started back this morning for Skylar and Kassey starts back next week. Soccer has started for Skylar and Kassey has been doing karate. Our lives are about to get hectic and to tell the truth, I prefer it that way. A little routine, a little craziness, and enough to keep my mind busy.

Hello again.

2011-06-21T22:25:00.000-04:00

I know it has been a long time since I last posted on here. In fact, it has been months - March 19th, Kyara's Heaven birthday to be exact. I have been running away from posting. I felt like I should be feeling better than I am at this point. I am not sure why, but things have gotten harder for me since her 1 year "birthday". I guess my world of denial is closing in and reality, the reality of missing her so much that my heart feels broken, is taking over. In the past few months, Skylar has turned 9, school has ended for the girls, and summer is already half over. Time is passing without me making the most of each day with my family. I am guilty of allowing my grief overwhelm me at times and it puts me in such a terrible mood. I think I believed that it was time for me to start doing things on my own. Stop writing on the blog, stop talking about Kyara, stop looking at pictures, stop communing with God. As I have decreased doing these things, I have found that instead of moving forward out of my grief, I have slipped further and further into it. I saw a picture of Kyara smiling at a birthday party on the computer at my brother's house and I almost lost it. In class (my class) we were watching a video with 5 year olds writing and one little girl wrote her "K" backwards, like Kyara used to do, and it made me cry. Scenarios replay in my mind over and over throughout the day. "What could we have done differently." "Remember how Kyara used to do this?" (And sometimes, my answer is 'no, I don't remember.) "What would she have been like now?" When I try to "shut-it off", I realize I am just numb to everything.

Kassey is growing up so fast. I pulled out the hand-me-down clothes from the attic to change out from the winter to summer. After each season, I have donated the good clothes to Goodwill or other charities, and each time it is a little painful. I am getting rid of the memories that I have of each of the girls wearing the same clothes. Its funny how I look at an outfit and I can remember Skylar wearing it at the beach, or in Washington, or at the soccer fields. Now Kassey is already in 4Ts and this the last size Kyara wore before the surgery. I am struggling with the thought of not pulling down hand-me-downs that have the memories from both Skylar and Kyara for Kassey.

God is good and mysterious, though. He has shown Kyara to a few of my friends in dreams. I believe it is to let me know she is doing great. She is not the one I have to worry about, I need to work on opening my heart and freeing my mind from trying to control everything! He has it under control, if I will just surrender my will to His will. Easy to say, not easy to do. But here is what I have been learning over the past 3 months... I can not do this alone. I have tried, and I have spun into a deep dark place.

God is using Kyara, even now to bless others. Our church, Fayetteville First United Methodist has a group called Squarefoot Missions who is planning to build a playground in Kyara's memory. This playground will be in a "rough" neighborhood in Griffin, Ga (a city that was devastated by the tornados that came through a month ago.) The playground will be a blessing to the children in this neighborhood. God, in His wisdom, has chosen a group of men at the church to remind me of the ways He can continue to find good in Kyara's passing.

Next week we are going on the Leonard/Dzenis family beach week. 7 children (ages 2-9) and 8 adults in one house. Well, at least we have the kids out numbered. We have done this beach trip for 8 years, and each year it is an adventure. Last year was tough for me, since it was our first year at the beach without Kyara, but I am hoping that this year will be a little easier.

I must say, I am feeling better, even now, after writing this down. I really believe this blog helped me get through the past 2 years, and I am so thankful for it (and your comments of encouragement!!) I am going to write more, for me... and for anyone who wants to read it.

1st anniversay - Kyara Dawn Dzenis

2011-03-19T22:05:00.000-04:00

One year ago today God gave Kyara the most precious gift - ultimate healing and a place at home with Him. Although I am so happy for her, I would give anything to have her back, even for a moment so I could hug her and kiss her and reassure her of how much I love her. I am so thankful for the time we had with her and for the lessons she has taught me, some of which I didn't learn until after her death. It is because of her that I have been on my journey to develop a relationship with God. It is because of her that I have had a journey to share with you. God works in mysterious ways and I pray you have seen His grace in her story.

Camp Stars

2011-03-16T21:51:00.000-04:00

The weekend at Camp Stars is behind us and I can't say that I am not happy to be on the other side of camp. Camp Stars is a camp run by Hospice Atlanta in which families who are mourning the loss of a family member can go and meet other families, enjoy the fantastic amenities at Twin Lakes, and spending bonding time while remembering our loved one. Skylar went to the kids camp in the fall and loved it. In fact, more than once, she cried after coming home because she wanted to go back to camp. So this spring, we figured, why not go to the family camp?  I had some reservations about going, but if it was important to Skylar, I would do anything!

A couple of things stood out to me during the weekend. I live in a land of denial most of the time. Somehow I have tricked myself into believing Kyara is just on a trip or something. Now, I know she is in heaven and I am not delusional or anything, but I think that is a coping mechanism I have been using without realizing it. The first night at dinner, we had to introduce ourselves and tell why we were there (who died.) For some reason, after hearing each family say "We are so and so and we are hear because________ died," it hit home. WE are there because Kyara died. Even writing that doesn't seem real. What do you mean she's dead? She's not dead, she is just not here right now. How do you grasp the fact that one of your babies are dead? Well, the way I am choosing to see it is... Kyara is not dead as we know it. She is in heaven very much alive. She is there waiting for us to join her. She is reminding me daily that it is my job on earth to not become spiritually dead and to rejoice in the truth of eternity together. This time apart will be nothing compared to eternity. In light of this way of thinking, I am going to say that I am not in denial after all. Yes, Kyara's earthly body is dead, but now she is so much more! Thank you, Jesus!

Another thing I realized is we are in a pretty good place right now. Gunars and I can and have laughed again. We enjoy today and we enjoy our girls. Although times come when I can hardly stop crying, they are fewer and farther apart than they once were. Memories of Kyara make me laugh more than cry these days. She was a "Goofy-Head!" Going to the camp and hearing everyone's heartwrenching stories was tough.  But the hardest part for me was the Memorial Ceremony at the end of the weekend. I found it to be too much like a funeral and I have already done the funeral. It was not something I wanted to go through again. Once was enough for me, thank you very much. They played very beautiful, very sad music. The atmosphere was so solemn, as soon as you walked in it was like the air had been removed from the room and it was difficult to breathe. People were crying before the ceremony even started.  This is the one part of the weekend that Skylar said she did not want to do. It was...difficult.

I was happy to see how much Skylar enjoyed the counselors and the other kids at Camp Stars. She loved them so much, we would have to "force" her to sit with us during meals! This was a family camp after all!

I also came to realize how difficult it is to know what to say when you find out someone's child/sister has died. The first night, while we were checking in, there was a little girl and her father making their nametags beside us. The administator mentioned to me that her mother was off to the side feeding their newborn baby. The little girl was looking at me and listening to our conversation, so I asked her "Do you have a little brother or a little sister," (meaning the baby her mother was feeding.) The girl informed me, "My little sister died and that's why we are here." Stare, stare, stare....pause. Pause.  Close your mouth, Genie, think. Say something...anything! "Oh, I am so sorry. Is your mother feeding your little brother or sister?" In my head, I am thinking... what should I say, do I mention Kyara? Do I say, "Skylar and Kassey's sister died, too?" How should I react? I later learned that this is how the little girl tries to make conversations with people. But I felt in that moment like I am sure many of you have felt when talking to me. Especially at first. What do I say? Should I say this, or should I say that?  No, better stick to I am so sorry. That is the safest route. I don't want to upset her. I think most of us are just looking for a connection, though. A way to say we are not alone.

We are 3 days from Kyara's anniversary/birthday. I am not sure how I will feel on that day.  I will do the things I do every Saturday, though. We have soccer, both Kassey and Skylar. We will cheer them on the best we know how. I will not stay in the bed and pull the sheets over my head, even though I may feel like it.  I couldn't decided if I wanted to do something in memory of Kyara for the 19th, there is much to be thankful for, but I would give anything to hold her in my arms again.   One day, that dream will come true!

Writer's Block

2011-03-08T23:08:00.000-05:00

Not that I am a true "writer," but I seem to be having a hard time writing my thoughts lately. I am on my 3rd draft of this post, which is something I have never done in the past. I have alsways just written what came to mind and then posted it. I felt that gave a more "true" idea of what I was thinking. This time, though, I have not had a clear direction as to what to write. So many things have been going on in my head.

Kyara's 1 year anniversary is coming up in a week and half. It has not slipped by me. I have not talked about it much because it still feels so unreal. I think I may still be in a denial stage. Kassey has been kinda taking Kyara's place some, too. I am not sure how to feel about this thought. Kassey has been my double edge sword. She is such a blessing. So sweet and wonderful. She fits right into things I remember Kyara doing. She even wears Kyara's hand-me-downs. These are wonderful and painful reminders everyday. But, I also think about the future, when Kassey no longer can wear Kyara's clothes, when she bypasses Kyara's earth age and I know I am going to want these reminders back!

I have been a bear to be around lately. I realize I have been moody and not the friendliest of people, especially to those I love the most. Poor Gunars gets the blunt of it. I can be downright nasty at times. I believe it is a defense mechanism. The closer we get to stressful dates, the worse I am to be around.

I am realizing I am a selfish person. I think about me, my pain, my tragedy, my life way too much. I have been on a journey for the past 2 years to discover a relationship with God. In the past I have been learning alot about what scripture says, intellectual stuff, but I have not really developed a relationship.   I read scripture (and I am not sure of the book, verse, or chapter - still learning;)) but it basically says... you have done all these great things in my (Jesus) name, but I do not know you. I am that person. Not that I have done great things, but I think I can be all talk and no relationship, if you know what I mean. To develop a true relationship with God, I must surrender to Him, death to self. For a selfish control-freak person like myself, this is a very difficult step. But as the book I was reading today says, if I want to hold onto the control of parts of my life, that means I am not trusting that God can take care of it. And if I can't trust God, then I can't have a true relationship with Him. So, I am working on this. I want to be able to surrender all control over to the all-knowing, all-powerful Father. While working on my surrender issues, I have had thoughts about missionary work. I am not sure when, how, what... but I have a strong desire to look outside myself towards how I can serve others.

This weekend we are going to Camp Stars. This is a family camp hosted by Hospice Atlanta. Skylar went to the Children's camp in the fall and really enjoyed it. I am a little nervous about going, but excited as well. I worry about the automatic wall I put up as soon as I am talking to anyone about feelings. I know I put up the wall more for my own protection than for anything else.   I have found a place of numbness that is "comfortable" at times.

Sweet Kassey is asking more and more about Kyara. Again, the double edged sword. I love that she loves her big sister. I love that she remembers her (at least she remembers her name and can pick her out in pictures. Kassey was just 2 when Kyara passed away.) She will ask me, "Momma, when is Kyara coming home?" We will have 15-20 minute conversations about where Kyara is and why she is in heaven. Kassey even said to me today, "I can't wait to be in Heaven so I can hug Kyara. When can I go there? It won't be for a long time, right, Momma?  What has to happen to my body? Oh, that's right, it has to stop working, right?" But Kassey doesn't really understand that Kyara isn't coming "home" because SHE is home. We are the ones who are not home. Kyara has the ultimate home. Which then brings me to another thought that I have been wrestling with... if we are not made for this world, why do we spend so much effort trying to keep people here? I for one, can't wait to die so that I can forever be in the company of my Heavenly Father. Let me rephrase that. I am not in a grand hurry. I am not going to help the process along... but when God calls me home, I am ready.

Well, there you have it. Not a great post, just a bunch of thoughts written in a crazy post.

Snow/Ice Days, Kassey is THREE!, and Basketball Championships... Oh Boy!

2011-02-17T14:42:00.000-05:00

Quite a title, huh? Well, the days keep moving forward, even when I wish they would slow down some. In January, we had our first snow of 2011. Snow is not really an accurate description. Ice is more like it. It was impossible to make snowmen. It was difficult to cut through the thick ice. In fact, Gunars got hit by a snow/ice ball (thrown by an 8 year old) and ended up with a black eye! Atlanta tried to be prepared for the storm, but 3 snow plows for the city didn't quite cut it. I even heard that our "sand trucks" were someone in the back of an old beat up Ford throwing sand on the road. We had the entire week off from school. I heard many parents complain about wanting their kids back to school, and I really didn't feel that way... until Friday. Monday-Thursday were great! We stayed outside, we sled on the ice, we went for walks around the neighborhood, we had a great time. Then Friday came. The roads were pretty clear by then, and really there wasn't much ice around anymore, but the kids still had the day out. I also had the cable guy come and Gunars was back at work. So I had to stay in the house with the cable guy instead of playing with the girls outside. Kassey had to nap and Skylar didn't want to be alone, so we all ended up inside alot of the day. That is when I said, "It is time for you guys to go back to school!"

Skylar was so sweet pulling Kassey down the hill on the sled.

Heading back to the top for another ride.

At one point, Skylar layed on the ground and just hung out there. I am glad she was wearing a ski bib under her jacket; the ground MUST have been cold!

While "body sliding" Kassey hit a sweetgum ball that was frozen in the ice with her cheek. After wiping up the blood and putting a Dora bandaid on it, she was good as new!

Skylar's attempt at "ice angels." Notice she is not make a budge in the ice.

Bundled up and ready to have FUN!

On January 27th, Kassey turned three! Wow! I have so many thoughts about this one, I don't even know where to begin. Three years old. Kassey is such a hoot. I think she has been a great stress reliever for me over the past 2 1/2 years. Of course, I loved her from the beginning - not just for the past 2 1/2 years, but it was for those times that God brought Kassey in our lives. Gunars and I weren't trying to get pregnant again... we weren't NOT trying, either. Just letting nature (aka GOD) take His course. He wanted the right child at the right time to be there for us, and she was! For her birthday, I decided to make her cake. Now, I am not a baker, so this was a challenge, and if I was going to do it, I might as well go for the gold. So, she wanted a Cinderella cake and I hit the internet looking for ideas. I came across one that I thought, "That is do-able." Fondant icing, buttercream, cake, cinderella doll... sure, no problem. After printing the recipe, I headed to Michaels' for all the supplies. I then noticed the price tag on all this cake stuff, and called my sister-in-law, Missy, to borrow her supplies. Skylar helped me make the fondant icing for the cake, which was alot easier than I thought. It was MESSY, though!

Skylar getting her hands dirty!

The cake needed some work. I dyed most of the fondant thinking I would need more for the skirt, but then didn't need it, so I just dyed the icing different colors to make the stairs. Sadly, I think the cake didn't taste too good. I put a TON more buttercream icing than needed and the cakes were dry. I told Skylar I would make one for her birthday, too. Her response, "No, thank you. Publix does a good job." Ouch. :)

Final Product

Skylar has been playing basketball this winter. Her team was off to a rough start, with a 6th place standing going into the tournament. There are only 8 teams in her bracket, so 6th place is... let's just say "not so good." However, tournament time came, and our team was on their game! We won the quarterfinal and semifinal games. WHAT? We were in the championship game? Sadly, our winning ended there, but we were so proud of the girls! They did a great job!

I know this has been a long post, and nothing too thought provoking, but this is life around here. I have lots of things I am struggling with, but I will write a different post for those in the coming days. We are heading to Spokane, Washington tomorrow to visit old friends. I look forward to having a good trip.

2 Years Later...

2011-01-21T22:16:00.000-05:00

It has been 2 years since Kyara's cardiac arrest. 2 years and there are parts that I remember like it was yesterday. 2 years and there are parts that I strain to remember and can't quite recreate. On January 21, 2009, I heard my baby's voice for the last time, I felt her touch ME for the last time. I wish I could recreate those moments. The parts that I remember the best are the traumatic parts. Walking around the corner and seeing one of Kyara's nurses with tears streaming down her face. Not being told what was happening, but rather led to a "holding room" and left there with my fears racing while I waited for the doctors. These are not the memories I want to be holding on to, but they are the one that I can't seem to let go of.

So what do you do on the second anniversary of your child's cardiac arrest which would ultimately lead to her death? Before I answer that question, let me be clear... I lost Kyara that day. Yes, she survived the arrest, but she never looked at me again. She never talked to me again. She never hugged me again. She never talked or laughed again. She was never KYARA again.

So, back to the question at hand... What do you do on the second anniversary? Well. I don't know anyone else's answer, but I struggled to get out of bed. Then I struggled to get dressed. I took Kassey to a birthday party for a 3 year old in her class and I struggled to smile. I had lunch with Bunny and Pop to investigate a resturaunt for my little brother's rehearsal dinner and I struggled to be a part of the conversation. Tonight we will have dinner with friends then go to the high school basketball game where Skylar will be introduced and receive a trophy for winning the 3rd grade division 3v3 basketball tournament. So, although I am in agony today, life goes on.

I believe God understands our pain. Yesterday I got an overwhelming feeling I should watch Louie Giglio's message "How Great is Our God," so while Kassey was sleeping, I put it on the TV (I got a Passion set for Christmas). I grabbed a blanket and snuggled into the couch with my drink and pressed play. To be honest, I started to dose after about 30 minutes. Not that the message was not amazing, I was just exhausted. But I was suddenly awaken by a realization that I was asleep. I sat up straight and put my full attention on what Louie was saying. He was saying that the cross is proof that "God doesn't always change the circumstances, He did not change them for Jesus on that hillside outside Jerusalem. But the cross is also proof that God always has a purpose in the circumstances and that His purpose and His plan will prevail and will triumph through any circumstances in this world." God knew Jesus was hurting on the cross, but He didn't change the circumstance (although He could have) because He had purpose in the circumstance. He also has purpose in our circumstance, in Kyara's circumstance. And His purpose will be revealed, in His time.

The other part that struck me, and has been proved to me today is scripture. Isaiah 40:31 "But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." No, I am not soaring high, but I did get out of bed. I put on that smile for the birthday party. And I will cheer like a crazy woman tonight for Skylar's trophy ceremony. God will help me. He will renew my strength... enough to keep me going.

Happy New Year

2011-01-02T23:26:00.000-05:00

The holiday season is coming to a close with a bang this year. Literally. I heard fireworks as I was trying to go to sleep in the brother-in-law's basement last night. Bang-bang-baang! Welcome 2011! Goodbye 2010, I can't say I will miss you...too much. Although; 2010 has left us with many memories. Some good, some not so good. But as I have said before, I cherish ALL the memories. They make me who I am today. They remind me of who I was. They are there to remind me of the journey we have taken.

We had a relatively quiet Christmas and New Years this year. I was nervous before Christmas as to how it would feel. Would I break down crying, would I be depressed and not enjoy the holiday. What would the first Christmas without Kyara being here be like? I think the chaos that goes with having younger children at home during Christmas time, and the chaos of getting together with multiple families really helped keep my mind busy. And when my mind is busy, I don't have time to stop and cry. That is good and bad for me. Good because I didn't want to be sad during Christmas. It is the time to celebrate the birth of our Savior. It is time to gather with family and loved ones and enjoy each other's company. This is a joyous time, not a time to be sad or depressed. So my mentality is to stay busy, so that I don't focus on the empty spot in my heart. This idea is bad in someways, too, though. I find that I didn't relax and really enjoy Christmas. I was so focused on staying busy: I continued to shop until the last possible moment (even though I could/should have been done a week earlier), we got our second Christmas tree (after the first dried out during our cruise and became a fire hazard), and for some reason, I got the brilliant idea that the presents would just wrap themselves this year. When 2 nights before the Leonard Family Christmas, I realized that we had NONE of the presents wrapped, (and I am opposed to gift bags - there is something about wrapping paper, ribbons, and boxes being torn open that gives me that warm feeling inside) I knew we were in trouble. Considering my wonderful, sweet husband doesn't wrap gifts (he does other things beautifully, but wrapping gifts is not his strong suite!), I knew I had a LOT of work on my hands. And of course I could only work while the girls were asleep, and during the day...SHOP, which created MORE WRAPPING... you get the picture.... it is a vicious cycle that had me up until 2-3:00 in the morning each night.

So, what was my point? Oh, yes, staying busy. But then, Christmas came and went. We had a lovely time. The Leonard Family Christmas was as uneventful as you can get with 20 adults and 7 kids between the ages of 8 and 2. "Wild and Wooly" is the way my mother, Bunny, describes it. But, what a nice way to spend Christmas Eve. We order a Subway platter, Chick-Fil-A platter, fruit, chips, and drinks, then spend the afternoon/evening in a big circle opening presents, laughing, and talking. At 6:00 everyone piled in their cars to head to church for the candlelight service and communion celebrating Christ's birth. How can you beat a day like that? Then its home and bed before Santa comes!

We spent Christmas Day at home with the girls. Just relaxing. And, it SNOWED on Christmas Day. We had a white Christmas. Quite amazing. The day after Christmas, we headed to south Georgia to visit my Grandmother and Granddaddy in Eastman. A good amount of Leonards were there, so it was really nice to see aunts, uncles, and cousins who we don't see very often.

The week after Christmas was time to breathe. This is the period that was hardest for me. I think I stayed so busy during Christmas that I was able to ignore the emptyness, but once the hoopla was over and Gunars went back to work, I started to get down. It was hard to figure out what the problem was. I was moody and had a very short fuse. By the time Gunars would get home from work, I was just about in tears. Finally one night, Gunars asked me what was wrong and it wasn't until after telling him that the cloud started to lift. So I am finding out, by voicing my sadness, I am able to release it, instead of holding it and letting it grow. I am certainly going to try this new idea next time things start to feel like they are piling up on me.

New Years was spent with the Dzenises. We headed to north Atlanta and spent the night at Zigurds' (Gunars' brother) house. We have a tradition of eating lobsters on New Years, so this year we had another feast. Then we rang the New Year in with champagne and James Bond marathon.

And now we are on to a new year. A new year means closing the book on 2010. One thing I have been struggling with is forgiveness. I think about how angry I am at the doctors that treated Kyara in Michigan. I can't help but look back at things with ideas of what they should have done or how things should have been treated. And I am angry that THEY didn't think of these ideas. But since I am working on forgiveness and letting go, I forgive them. This is what I have to remember... Doctors are not God. I tried putting that label on them, and it didn't fit. More than once, I believed that the doctors will fix everything, but that is not realisitic. Doctors are not God. Doctors make mistakes. God does not. Doctors don't know everything. God does. Doctors are not perfect. God is. So it is unfair for me to be angry with imperfect humans who made a mistake. God allowed this to happen, and God does not make mistakes. All things are done to glorify God and Kyara's accident and death will be used to glorify God, too. For, through this pain, I have become more aware of God's love. HE is the one who carried me through the past 2 years. He has given me strength when I felt like I had none. Somedays, He is the only reason I can get out of the bed. I missed an opprotunity to glorify Him today at church with something my mom said to me. The surmon was about the light in the darkness, and my sweet mom said she saw me as the light through the darkness of the past 2 years. But really, it is not my doing... it is the Lord's! He uses humans to show His glory, and HIS light was the one shining, not mine. My human mind and body is incapable of shouldering the pain and grief of the past two years without Him. The glory is God's, but thank you, Mom. And thank you for being there for me, because I believe God made you my rock.

December

2010-12-19T22:41:00.000-05:00

We are getting ready for Christmas here and things are a "little" crazy. We are on our second Christmas tree of the season. Our first tree was trouble from the start. It fell at least 2 or 3 itmes (once it was even tied up!) before we finally got it somewhat stable...with lots of string helping it and it leaning way to the side, but hey, it wasn't falling down anymore! Then we went on the cruise and forgot to leave instructions about watering the tree. Unfortunately, by the time we got home, the tree was so brittle, if you looked at it funny, branches would crumble! After deciding the tree was a fire-hazard, we took it down and have now put up our second tree of the 2010 Christmas season. So far, this one is leaning only slightly to the right and hasn't fallen yet, so it is a keeper.

Gunars and I went on a fantastic trip/cruise the first week of December to Ft. Lauderdale then to Puerto Rico, St. Thomas, and St. Marteen. While we were in Ft. Lauderdale, we met the little boy who is going to be using Kyara's carseat. The father is an old friend of Gunars' from Venezuela and we had the opprotunity to meet the family while in Florida. I had mixed feelings going into this. When Gunars first mentioned it as a possibility, I jumped at the chance. Absolutely, I wanted to meet them. But as time got closer, I was beginning to get cold feet. What would it be like? Would I bawl my eyes out? Would I feel nothing? Would it make me sad to see this precious child, or happy to be able to help them in anyway we could? Well, the little boy was beautiful. As soon as they were in the house, I asked to get him out of the stroller so that I could hold him. He reminded me of Kyara in so many ways, and to be able to snuggle with him was like wrapping my arms around her again. Of course, the tears came. But I tried to stop them the best I could. It was nice to talk to the mother and give some encouragement and really, just talk to someone who understands the trials and tribulations of having a severly disabled child. The little boy was only 2, so he was still like a baby. It is a bit different as they get older. Things like moving them from bed to wheelchair, or into the shower, or in the car are things that have to be figured out as they grow.

The next day, Gunars and I took a walk on the Riverfront in Fort Lauderdale.

We then boarded our cruise ship to head off on our 7 day trip. Can you see me in the picture below? It is like a Where's Waldo. The boat was HUGE!!

We had a balcony room.

After a full day at sea on Monday, we arrived in Puerto Rico on Tuesday. We decided to do a cruise excursion and do a zipline canopy tour through the rain forest. Can you believe it rained? But that didn't stop us. After the zipline tour, we caught a taxi back to old town San Juan and ate dinner. Then back to the ship.

The next day we awoke in St. Thomas. We went to a small Sea World type establishment and Gunars fed stingrays. We watched a show with sealions and learned about sea turtles. We then walked over to Coki Beach and Gunars snorkeled to fish watch while I rented a beach chair and people watched. We rented a taxi/bus and took a short sightseeing tour of the island then headed back to the ship for dinner.

The next morning we arrived in St. Marteen. We decided to rent a car here so that we could see the island on our own time. We arrived on the Dutch side of the island and hit every beach we could to take some pictures. I found it interesting that each beach had a different look to it. Some were sandy, some rocky, some a mixture of the two. We drove to the French side of the island, too, and ate lunch at a beautiful restraunt. Unfortunately for us, we mixed up the conversion ratio of the prices, and lunch cost more than a nice dinner out at home! What a surprise that was when we got the bill. Oh well, the food was AMAZING! We also hit the nude beach on the French side. NO - we did NOT go nude. :) But a nice gentleman put on his towel and offered to take our picture.

I would insert pictures, but for some reason I can't get the image thing to work. I will try to post more pictures later.

We spent the next two days on the ship headed back to Fort Lauderdale. By the time we got home I was more than ready to see the girls again. I missed them so much, but must say, not having to cook, clean, do laundry or any of the other things was NICE. ;)

As good of a time I had on the cruise, and it was amazing, I still had this hole in the my heart that wasn't filled. It seems nothing can fill it. That part of my heart belongs to Kyara. It will always be hers, and one day, when we are together again it will be whole again. Until then, I am trying to learn to live with a piece missing.

Cruising Along

2010-12-12T12:13:00.000-05:00

In case the title didn't give you a hint, I'll enlighten you. Gunars and I went on a cruise. We celebrated our 10th anniversary this October and decided to take a cruise. It was important for us to get some alone time to really get solid again. This year has been a stressful year, well, actually the past two years have been stressful, and there are two ways this stress could drive us... together or apart. We are committed to maintaining our love for each other and our family, so we needed to take time out for the two of us.

If you haven't been on a cruise, I HIGHLY recommend it! Wow! The ship was fantastic, the crew was unbelievable, and for us, the length was perfect. We went for 7 days to the Eastern Carribean. By day 5, I was missing the girls and ready to go home. Gunars felt that way the 6th night. Really, it worked out well. We saw shows on the boat, we toured St. Marteeen and St. Thomas and ziplined in the rainforest of San Juan.

Skylar and Kassey spent the week with Bunny and Lulou (Gunars' mom). My parents had the girls the first weekend, then Lulou stayed at our house with the girls the rest of the week. Skylar had a tough time with us going, but Kassey didn't really know what was happening. The second night she told me on the phone that she would "Beat you home". Well, yes, Sweetheart. By a couple of days! :) We were able to stay in touch with limited internet and cell phones when we were in the US territories.

Right now we are sitting the Ft. Lauderdale airport waiting for our flight home. I am ready, but not looking forward to the cold weather I hear Atlanta is having. Yuck! Just yesterday I was laying out by the pool in my swimsuit!

I will post some pictures once we have settled back in at home.

Christmas time is just around the bend and I am perplexed as to how to deal with this holiday. We have two stockings hung, one for Kassey and one for Skylar. Seems a little strange. I still have all of Kyara's ornaments that she made. They are on the tree. One has her face and is in the shape of an angel. I put that one front and center. I want her to be in full view.

Memories

2010-11-21T04:30:00.000-05:00

Thanksgiving... What am I most thankful for? Memories. Not that I want to live in the past, but what a joy to be able to remember the good times. Now, if memories could be a little more selective, that would absolutely rule. "Only the good ones, please!" But, to be honest, sometimes the bad ones are good, too. It reminds me of how much I loved Kyara because of how much they hurt. A little weird? I want to remember my memories, and each day they seem to be slipping slowly away. The sound of Kyara's laughter is slipping away. The warmth of her touch, the smell of her hair, the funny things she would say and do. When I am in the moment, I think, I will remember this forever, but it doesn't happen. People grow and change and the new memories cover the old.

I am getting used to having only two girls at home. It rips at my heart. I don't want to get used to it. This is not how it was suppose to go. Sometimes, even the painful memories are welcomed with open arms.

So, I have decided to share some of my memories. Not all at once, I want to cherish them, too. But, here and there... a memory.

Kyara had her own nickname for herself. Yes, we called her Kiki sometimes, especially when she was a baby and toddler. But, even as she got older, there was one that stuck and she would remind me of her name. I would call her "Silly". And everytime, she would reply: "My name is not Silly, its 'Goofyhead.'"
No exclamation point. She was completely serious and would deadpan the answer. I don't remember where she got this name, but she liked it. A memory that makes me smile through my tears.

I love you and I miss you so much, Goofyhead!

Before and After - GRAY NEWS!

2010-11-03T15:46:00.000-04:00

The before shot. A little nervous!

Final cut. Well, from the front, I don't even look that gray!

But the side picture tells another story!

Hindsight is 20/20...or maybe not...

2010-11-02T23:49:00.000-04:00

At this time of the year, I think back to 2 years ago and wonder... did we make the right decision to go do the esophageal surgery on Kyara? I can honestly say..."Yes, we made the best decision we could at the time." But, I wish we had known the future, so that I could say.. "NO! Don't do it!" That is not the way life works though, is it? We have to make daily decisions on what is best. Before making the decision to have the surgery done in Michigan, I did not pray to ask if we were doing right. I did not let God take the lead. I trusted my own Mommy instincts to decided what was right or wrong and I walked the path alone (well, not alone, with Gunars. And actually, the more that I think about it, I wasn't alone because God was still there. He didn't forsake me just because I didn't ask His opinion. Although, He may have led us in another direction.) My point is... we made the decision with our human minds and hearts, not asking God's will. But don't you know, the moment it was time for the surgery I was praying for a good outcome. Again, not asking for God's will, but mine. So goes the story of my life... Not "Thank you, God for the awesome blessings. How can I best serve You?" But "God, where are you? I need help. Why are you not here?" It wasn't until Kyara's cardiac arrest that I started to really pray for God's Will, but even then, it was..."Do this...oh, if it is Your Will." I would kinda add that in as an afterthought. And I came to realize that my plans, my will, was not being done. I so clearly remember the day that I said "God, what is your plan? Please help me feel peace with Your Will. And if that means, Kyara receives your ultimate healing in Heaven, then let it be." Suddenly, I felt an overwhelming peace and a voice in my head said, "Kyara has been ready. We have been waiting for you to be ready." And I knew that her time left was short and that it was ok. It was not too long after that that Kyara's health began to decline and we ended up going through Hospice. Although the process was hard, God carried me through it and I was at peace with our decisions.

Now, 7 1/2 months later, I am having doubts. In the past month or so I have not been praying regularly - except the prayers with the girls before bed. I have fallen out of my devotional time. I have allowed Chemistry and this world take over... and now I feel like I am swimming up stream without a paddle (I know I didn't get the metaphor or similie or whatever correct, but I can't remember how the saying goes.) I am wrestling with myself constantly as to whether we made the right decisions. Did I really hear that from God, or was it just my mind playing tricks - or worse, was the Devil testing me? Did I love her enough, does she know how much I love her? Whether I prepared Kyara for God (which is my biggest fear...). They say "Hindsight is 20/20," but I say..."Not always." Now, I make sure I pray with Kassey and Skylar. We read a devotional Bible almost everynight, and I don't shy away from conversations anymore. I am trying to instill the importance of having a relationship with God and Jesus. But, what about me? I need to focus on my relationship because it is hurting. And I am finding that when my relationship with God and Jesus is suffering, I don't feel great. I start to feel numb which is hurting all my other relationships around me. So, my new goal is to start spending more time with my Lord and Savior. I know this will help bring me out of the rut I am in.

Lord - I trusted you with my life before, I will lean on you and trust you again.

Not to make light of the all that I have written, but just a quick Gray Hair Update: I have an appointment to get my hair cut tomorrow (Wednesday) at 12:30 pm. I am looking at a pixie style cut to remove alot of the colored portions. This will be the first time I will have this short of hair. Oh boy -- YIKES! I will post pictures when we get home.

One more thing - I love to read your comments. When I see that I have a comment on the page, it absolutely makes my day. Agree with what I write, don't agree and tell me where I am wrong, just say hello, suggest songs for the page, whatever. I greatly appreciate you all who have kept up with us and you have been such a wonderful inspiration to me. Thank you for caring about our family, and for "listening" to me vent. :)

HALLOWEEN!

2010-10-31T10:32:00.000-04:00

"H-A-Double L-O...W-Double E-N" Spells Halloween!

I am trying to get into the spirit, but this year is a little tough. I am working on desserts to take to a dinner tonight and I have a house that looks like I should be on Hoarders. The boxes are piled up, the laundry is everywhere. It is a mess. In the mean time, I am doing an education curriculum class and chemistry (which Gunars keeps reminding me... chemistry is not that bad, but your teacher is ruining it!) and my in home labs are not working. I am doing the homework, but I don't really understand what I am doing. I am terrified to take the exam... especially if its not open book! How am I suppose to remember all those formulas, I am having a hard enough time remembering my kids' own names lately! Get through this semester... that is what I am planning... just get through it (and pass so I don't have to do it again!)

So, this is a short post since I really have too much to do, but I will post again soon. I can't wait to get pictures of the girls and Gunars with their Halloween costumes on. Oh, and by the way, I did decorate some for Halloween. We have a "graveyard" in the front yard, some spiderwebs, etc. This is a fun holiday and each year I hope it will be less and less difficult for me to enjoy it. It is difficult to remember that 2 years ago tonight we started our journey to Michigan full of hope and excitement for Kyara's surgery. We never expected to lose her. Amazing how excitement turns into horror. A little like Halloween, though... Excitement and horror.

It's Fall, Ya'll!

2010-10-17T21:28:00.000-04:00

The mornings are cooler and the days are perfect. The leaves are changing and the smell of pumpkin spice is in the air. I LOVE fall! Soccer is under way and we are spending a ton of time at the fields. I can't think of a better place to be!   We are discussing the November soccer tournament that we will take the girls, too. YES! Tournament time = FALL! College football is full stream ahead, and I am STILL cheering for the Gators, even if we are having a harder time this year. FALL, Ya'll! My favorite month of fall is October. I love the weather, I love the pumpkins, I love the colors, it is like God has painted a different beautiful picture everytime you look at the trees! What an artist! I love the fact that Gunars and I were married in October, and I LOVE, LOVE, LOVE Halloween! I love CANDY! Trick-or-Treating! Dressing up! Yipee! FALL, Ya'll! I mean, who can resist some yummy candy corn, or even better, the good chocolate from Trick-or Treating? I have to wait to buy my candy stash until closer to the big night, because I have been known to eat all the treats!

I looking back over my previous paragraph and I realized that I appear to be exclamation point happy and caps lock crazy. Sorry about that. I just want to emphasize how much I love this time of the year, because I am now facing conflicting emotions.   Halloween is my favorite holiday. I love getting spooked. I love "haunted" houses. I love the creepy, scary, adrenaline rush of not knowing what's coming around the corner. I love the makeup and the decorations. I love Trick-or-Treating, and I love candy. This year, however, I am not sure how I should feel. I want to decorate our yard and make it "scary", but is it inappropriate for me to put up gravestones? Are skulls now off limits? How about the signs that are bit... unwelcoming? Having lost a daughter 7 months ago, I am now a bit more sensitive to these things. But at the same time, that is part of the fun of Halloween! The pumpkins are nice and all, but what about the thrill? I also don't want to make light of death or the afterlife. In the past it has always been a fun holiday, but now, it has new meaning. I am not sure how to approach it.

We are busy bees around here. I am still struggling with Chemistry. It stinks! Skylar is in the middle of her soccer season and has had tryouts for basketball. Kassey has also started soccer with SmartStart and is loving it! She tells us, "We go to MY soccer game?" Shinguards, jersey, shorts, long socks, ball... check! Very cute, fun hour watch 2-4 year olds trip over the ball...check!(I have been corrected, Kassey doesn't trip over the ball ;) But they look like it because the ball is taller than their knees!) Kassey loving every minute...check! Good times! Gunars is helping coach the SmartStart group and has really enjoyed getting involved with the kids again.

Last week, Bunny, Kassey, and I took a roadtrip to Florida to pick up... my new car! Yeah! My poor van has been on its last leg for some time now and I have been nursing it to keep it on the road. So, we did a ton of research and waited for months to find the perfect car to replace the van. Then, one morning, I saw a car on ebay that was not exactly what I wanted, but would be okay. It had 52 minutes left on the clock and had an "Or best offer" option. So we low-balled, knowing that if we didn't get it, that was fine since it wasn't "perfect." Well, to our surprise, it was accepted! So, 36 hours later, we had a one-way rental car and were on our way to good ole' Florida!   This trip was hard on Skylar, though. I think the fact that Bunny, Kassey, and I were on a roadtrip brought back memories of us going to Michigan because it was Bunny, Kassey, Kyara, and I on that trip. We had told her it would be a few days, then we would be back home. Instead it was a few months, and Kyara had had the cardiac arrest, so her sister was never the same again.   Life changes unexpectedly sometimes. Anyway, the 2 nights we were gone were tough, but Skylar seems to be doing much better now.

So, on to the real news... My hair. I have not colored my hair in 2 1/2 months. My silvers are coming in nicely. Now I have to make the decision about what to do. The silver is starting to really show and looks a bit tacky with an obvious line of colored hair versus silver hair. I am thinking about buzzing all my hair off. Ok, maybe not a total buzz, but a very short pixie style. I have been looking around and I am thinking a Jamie Lee Curtis style will work. But now I need the guts to get the cuts! Enjoy the pictures, and don't laugh too hard!

Have a blessed week!

Wow! The Silvers are showing!

Hey Sweet Angel,

2010-10-04T10:53:00.003-04:00

Hey Sweet Angel,
*sob, sob* I miss you! *sob*
Love,
Mommy

(now I must go blow my nose.)

New Additions to the Family!

2010-10-01T00:12:00.000-04:00

NO, I am not pregnant. No, we did not get a pet! This week my brother has gotten engaged!! I am adding a new sister-in-law and niece to my "official" number count! They have been together for long enough, that Amy and Michelle had already made the unofficial count. That is on the Leonard side of the family. Way to go, Matty!

On the Dzenis side, we have had a new baby join the crew. My brother-in-law, Zigurds and my sister-in-law, Jeni had a baby boy on Monday. We are so excited to have fresh meat to kiss on! Zorin is so TINY and beautiful. Not a pimple on that sweet face of his! We headed up to Duluth (north Atlanta) tonight to get our baby fix. Zigurds and Jeni make beautiful babies!

I am trying to keep my head above the water with this chemistry. December can't come quick enough. I am going to be thinking positive thoughts about this class. But secretly, I can't wait for the semester to end! Shhhh.... Don't tell anyone!

Busy, Hectic, Tired

2010-09-25T23:31:00.000-04:00

Those three words explain my life right now. I am doing an online Chemistry class, which is kicking my "hiney", another education class (which I really need to start working on!), I am helping coach 2 soccer teams, working on a Bible study class, and trying to be a decent mom and wife when I can. My house is a wreck, laundry has been piling up for days, and I can't remember the last time I swept or mopped the floors, nevermind the bathrooms. A warning should be put up... "Enter at your own risk!" Now that Halloween is right around the corner, I bet I can find some decorations that would be fitting! As busy as my life seems to be, I still feel like I should be doing more. Something is missing. Am I making myself this busy so I don't have to sit still and be in my own thoughts? That could be. I need to be exercising somewhere in there, but I can't seem to find the time during the day, and I refuse to get up at a "redonkulous" time in the morning. I need my sleep way too much! But I have found that I have more energy when I exercise. Not right away, but as I get into the routine, it does the body good!

The other day I took Kassey to the bookstore because she loves to play with the trains in the kid's section. While we were there, I picked up a book to "browse" through. I only planned to stay for 10-15 mins because I had lovely chemistry calling my name at the house. But, since procrastination is my middle name when it comes to things I don't want to do, we went to the bookstore. Anyway, the book that grabbed my attention was called "The Boy Who Went to Heaven and Came Back" (or something like that). Well, I picked it up, a bit interested to see what it said and I was soon engrossed in this book. It is written by a father and son who were in a carwreck and their journey through heaven, hospitilizations, comas, paralysis, etc. It is a story of hope and love. The father had written a blog like this one during this traumatic time in their life and based his portion of the book on the blog. The boy writes about God, Heaven, and love. An hour and half after we walked into the bookstore, and many tears later, I finally said... I need to put this book down. I guess I will have to return to the bookstore to finish the book! So much for a 10-15 min visit!

Skylar has been playing soccer for the past 2 months and is starting to really understand her role on the field. It is such a joy to watch her go from looking lost and unsure to confident on the field. Still a long way to go, but she is loving it! But, if she changes her mind and wants to play a different sport, I am all for that, too. I just want the girls to be active.

Kassey starts soccer next Saturday. I am so excited to bring my chair and sit and watch. She is so funny! Lately she has been telling us "I love you so, so, so, so, SO MUCH!" Each so gets louder and louder until she is screaming the last "so much!" It tickles my heart to hear it. I need to record it so that I will always be able to hear her say that to me. That is one thing I wish we had more of. I don't have alot of videotape of Kyara. I don't know if I could watch it now, but I wish I had more for the future. Lesson learned. VIDEOTAPE YOUR KIDS!

I need to do some more chemistry, so until next time... may God bless you and your family!

The Shack

2010-09-14T21:52:00.000-04:00

Has anyone read The Shack by William P. Young? It is a novel about a man who faces a terrible tragedy, then has the opportunity to meet the Trinity face to face. I started reading this book around the time Kyara was getting very sick, and I had to put it down. The book hit too close to home with me and to be honest made me a bit uncomfortable. The questions that were asked and screamed and cried over, were the same basic ones I asked. "Why?"... "How could you let this happen?"... "Where were you?"... etc. But recently, I picked the book back up and decided to finish it. We were on a trip to Gainesville, Fl (Gator Country!!), and I put it in my bag as a second thought. While driving down, I pulled it out and started to read.

One of the things I have been struggling with is how am I suppose to put God in front of everyone and everything else? Gunars, Skylar, Kassey, and Kyara are suppose to be after God. My school work should be after God. Cutting the grass (or in our case, the weeds) should be after God. Eating, sleeping, getting showered and dressed are suppose to be after God... you get my drift. How is all this possible? I still have to make dinner! I still have to shower! And I get to hold Gunars, Skylar and Kassey in my arms and love on them all day long. I can't imagine putting anything before my children. And yet, God is suppose to be number one.

Well, there is a part in the book that really spoke to me. The main character in the book, Mack, is talking with the Trinity (each has a different "name" and "personality"). He is trying to figure out priorities.."You know: God first, then whatever, followed by whatever." The way the Trinity explained it hit me like a light bulb. They said there is a flaw with living by priorities. "If you put God at the top, what does that really mean and how much is enough? How much time do you give me before you can go about the rest of your day, the part that interests you so much more?" God doesn't want just a part of you and a part of your life, He wants all of you and all of your life. He wants to be at the CENTER of everything you do. And when we live in Christ, then we are able to live together through everything that happens to us.

Oh, my! I don't know about anyone else, but when I read this, I thought... Now THAT makes sense to me. God wants to love our children, our lives, the fun things we do, the work we do, everything and share our joy with Him. He wants us to glorify Him through our lives each and every day. What a weight off my shoulders. I don't have to stop living my life, I have to turn it over to Him and live it WITH Him! Let Him do the worrying and firguring things out, I get to enjoy the joys He brings to me. And all things are blessings. Even the "bad" things.

Kyara's death has been gut wrenching. Heart breaking to the nth degree. No, let me backup. Kyara's cardiac arrest has been those things. Her passing on to her Heavenly home was a blessing. She was miserable here. And God did not leave her, He gathered Kyara up, and took His baby home. He healed her and for that I am so thankful!

It has been almost 6 months since Kyara's death. Wow. 6 months. It has been 1 year and 8 months since she was able to look at me, smile at me, hug me, kiss me, or tell me she loves me. It has been 1 year and 8 months since I was able to smile at her, hug her, kiss her, tell her I love her, and know that she understood or that she even knew I was there.

Lately I find myself thinking more about Skylar and Kassey and things going on here, and less about Kyara. This fact tears me up. I don't want to forget her. But I also want to move on. This makes me feel so guilty. Then I think of what Jesus says, "Let the dead bury the dead." I don't want to be emotionally dead to what is happening here on earth. There are so many joyous things God has instore, I can't sit around. I need to live life to the fullest. Kyara is happy and healthy again! Thank you, Lord!

To Grey or Not to Gray... That is the Question

2010-09-02T22:44:00.000-04:00

As only my closest confidences may know, I have been going gray since I was in high school. I am sure that most anyone who has seen me lately knows that I color my hair, and sometimes, I don't do a great job of it. My roots grow out at lightning speed. It seems like I need to color my hair every week! The past 2 years, my grays have gotten even worse. I think stress plays a major factor on how quickly my hair has turned. But, I also have to thank my mother, Bunny. She has a headful of beautiful gray hair. At least I didn't get my dad's hair, or lack of it, like my brothers! :) So I went today to get my first haircut since March (a week before Kyara passed away). While I was there, I asked what I should do about my grays.

"Embrace them!"

"WHAT???"

Ok, so Gunars has been telling me for a while now that he thinks I should just "Go Gray." Now my hairdresser is telling me to let it grow out. I am not sure. I think I might just go for it, though. I was told the best way to go about it is to let my roots grow out, then we will cut off my hair at the colorline. OH boy! Yikes! But, seriously, it is JUST HAIR. There are so many other things in life to stress over than HAIR. I figure, if it doesn't look good, I can wear a hat, recolor, and let it grow back out. Why worry about it?

So, if you see me on the street, please don't mistake me for Skylar and Kassey's grandmother.

Open House Tonight

2010-08-26T10:35:00.000-04:00

Willis Road is having their Open House tonight, so I will be going back to elementary school with Skylar. I can't say I am looking forward to this. Everytime I go in the school, my stomach knots up.

Here are some recent pictures...

Kassey and Zoe (her cousin) at my Nannie's house before Papa's Hall of Fame Induction

Zoe, Ansley, Kassey, Curtis, Preston, and Skylar at Papa's school - Jordan High School. We took a tour around the high school. Papa's picture is directly above the kiddos!

Kassey and Skylar before Skylar's first day of school.

Skylar's first day of school. I messed up the date, it should have been August 9, 2010.

Kassey's first day of school! She was SO excited!

Kassey caught this catfish at Nannie and Papa's river. She was sticking her tongue out at it. Not sure if she liked the fish or not, but she wouldn't touch it!

Poor Skylar didn't have as much luck as Kassey. I think it is because she didn't use the "barbie" fishing pole! :)

Back to School

2010-08-24T12:10:00.000-04:00

I know I wrote in my last post that I would write again in just a few days, and then the days became weeks, but we have been CRAZY! Or, maybe I have been crazy. I guess it is not fair to assume everyone else in my family feels as out of control as I do. What could make me so busy? Well, lets step back a bit in time and find out what the Dzenis clan has been doing.

As my last post said, we made dinner for the families and staff members at Hospice Atlanta on Friday, August 6th (Kyara's earthly birthday). I didn't know how I would feel going back into the same center where Kyara spent her last days. Looking around, going to the playroom, and seeing some of the nurses who cared for her was a little difficult, but not as bad as I thought it would be. I actually kinda enjoyed being there. God was lifting me up that night, because instead of sadness of what we have lost overwhelming me, I was happy to be there serving others. Providing good, warm, homecooked comfort and love.

We served the dinner/buffet in the library and in the back there are windows and a door that opens up to a courtyard. While we were sitting around talking, it began to snow the biggest snowflakes I have seen. They were as big or bigger than the ones in Michigan (which I thought were the size of a small car!). Imagine, SNOWING in August... in Georgia (it was close to 100 degrees outside). Skylar and I walked over to the window, amazed by what we were seeing and realized it was a white crepe myrtle dropping flowers that was creating the "snow". The crepe myrtles were so tall (above the roofline) that we did not notice them at first. Haha! As a mother of an angel, I find myself looking for signs that Kyara is trying to reach out to me all the time. Was this a sign, was she saying "I'm here, too?" Or, was this just flowers falling from the trees? My yard sign swinging in the breeze, except there is no breeze... is that you, Kyara? The rainbows? The chill bumps I get at strange times? The birds that come to our breakfast room window when we are eating? Even Skylar mentioned that she sees a yellow butterfly everyday and "is it following me? It is Kyara."

The next day, Saturday, August 7, my late grandfather was inducted into Jordan High School Hall of Fame. He was a vice principal and principal at the school for about 30 years. It was an amazing honor to able to attend his induction with my family. Papa was an extraordinary man and made a positive impact on so many lives at Jordan High School. After Kyara's death, I actually had some of his old students write me letters to let me know how much they respected my grandfather and were sure he was already in heaven to help welcome Kyara.

We are also spending time in north Atlanta at Gunars' brother's (Zigurds) house. What do you get when you put 2 civil engineers and 1 chemical engineer together? A huge, beautiful deck that will hopefully be done soon! Gunars, Zigurds, and their dad (Eriks) have been working on this deck all summer. Once it is completed it will be amazing!

Skylar started school on Monday, August 9th. I can't believe she is in third grade. We had meet the teacher on Friday before school started, and that was hard for me. I am not sure what it is about the elementary school that gets me everytime I go, but it makes me sad. I think it has to do with the fact that Kyara should be in first grade there, and she's not. I walk down the hallways and it reminds me of taking her to school. OUCH! After meeting Skylar's teachers, we went back to Kyara's Pre-K teacher's class. Mrs. Carlisle and Ms. Laurie have been so great to us, and we wanted to say hello. Well, I can truthfully say, I hope I never go in her classroom again. That was more powerful and painful than I can explain. I saw her cubby where she put her backpack. The table she sat at on the first day of school when we came to celebrate her 4th birthday with icecream. And, to top it off, there is a little boy in the class with some disabilities due to cardiac arrests he had as an infant. While we were there, the mother and son came in. She was so excited that her son was able to go to school. He has overcome and continues to overcome so many obstacles. While I am thrilled for them, my heart breaks! I am jealous that Kyara wasn't able to recover like that, too. They were so excited and I felt like punching a wall. I said congratulations to them and got out as quick as I could before I burst into tears. And so it goes....

Skylar has also started soccer again. She is playing on a travelling team and it is much more serious than the recreation team she played for last year. The first week of school, she had practice from Monday-Thursday. This past weekend, Skylar had her first tournament! 4 soccer games in 2 days. She was exhausted. I LOVED IT! It brought me back to my years of playing. I had forgotten how much I love to be at the soccer field!

Kassey also started school last week. She is going 2 days a week from 9-12. She is going to the same pre-school/church that Skylar and Kyara went to. Again, it was a little difficult to go into the school and see the same faces, the same rooms, the same hallways that Kyara ran down. But, not as difficult as Willis Road was. I think it is because Kyara completed her time at Cornerstone Kids, and she should be at Willis Road now.

During the time Kassey is at school, you would think I'd have plenty of time to write a post, right? But, I am going to school now again, too! I am finishing my teaching certification and I use the time Kassey is at school to study CHEMISTRY! YIKES! And now so much of the classes are online, I am having a hard time keeeping up with them. Technology is kicking my rear! I am having a hard time FINDING my assignments, let alone understand the material. I guess I will figure it out, but for now, I am drowning in this stuff!

Gunars is doing well. He has been playing soccer and basketball during the week at night and enjoying a little family time on the weekends. In his last soccer game, he pulled a hamstring. He said he was trying to rip a hole in the back of the net, but instead he hurt himself. :) I know he enjoys playing and it helps relieve stress so I hope he will be feeling better soon!

Kyara's 6th Earthly Birthday

2010-08-06T22:10:00.003-04:00

Whew! I am exhausted! Today has been emotionally and physically difficult. I think more emotional than physical, we were just crazy busy! Between getting food together for Hospice Atlanta, making T-shirts for us to wear, and Skylar's "meet the teacher," we have been running since 8:00 this morning! So, I am going to let the pictures do the talking and I will write again in the next day or so. The first two are of Kassey and Skylar helping me make meatloaf. Doesn't it look like fun??

We had a nice time serving the staff and families at Hospice Atlanta.

This is the front of our t-shirts. Kyara used to talk to me about the rainbows she would see when she would be put to sleep for procedures.

Skylar picked out this saying and I liked it. Even during the "bad times" we need to keep our chin up and look for the good.

Ronald McDonald House Dinner

2010-08-03T23:05:00.002-04:00

Tonight we made dinner for the Ronald McDonald House. Once we were there, things went smoothly. Thank you to those who have given me recipes to use. You didn't know it, but I used them tonight. We served - Mimi's Meatloaf, Amy Dixon's green beans bundles, mashed potato casserole, and gooey butter cake, with bread, salad, and watermelon. Nothing like homecooked comfort food to fill some tummies!

Because there was limited ovens at the House, I decided to cook all the meatloaf before we went. I didn't want to spend the day cooking when Icould be playing with the girls, so I waited until they were in bed last night before starting the first round of meatloaf (I needed to make 3 "loaves". So after mixing all the ingredients (which includes most everything in your cupboard) and shaping the loaf. I stuck it in the oven and set the timer for 2 hours. After about 10 minutes, I realized I had forgotten a key ingredient. So I grabbed the meatloaf out of the oven and remixed it with the special ingredient. I stuck it back in the oven and reset the timer. Then I laughed about how I almost ruin the meatloaf and thank goodness it wasn't hot yet... I worked on the computer until the buzzer rang. I jumped up to check on my masterpiece and noticed I didn't smell the normal yummy smell of meatloaf. I got over to the oven and it wasn't radiating heat like it normally does. I opened the door... and you guessed it.... I had forgotten to turn on the oven. BOOOO! So at 11:30 last night, I turned on the oven and went back to work on the computer for another 2 hours of cooking.

This morning Skylar and Kassey helped me with the meatloaf. I love this recipe because you get your hands in there and really have a good time making it. The girls love to help. Kassey can help with pour in the ingredients and crunching the saltine crackers, Skylar helps chop the onions and measure the ingredients. Then when it is mixing time, we roll up our sleeves and dive in! The feel of squishing meat between your fingers is... unforgettable. I love it! It reminds me of childhood. Not sure what part exactly, but childhood in general. So the question remains... Did Genie remember to turn on the oven this time??? YES! I DID!

Luz Estela and Jeni (my sister-in-law) met Gunars, Skylar, and me at the Ronald McDonald House to prepare the rest of the food. It was fun, and I think we all had a good time. This House was different from the one we stayed in while in Michigan. Most of the families were NICU parents, or Rehab families. There were patients who were doing outpatient rehab that were staying at the house. In Michigan, we didn't see many patients. Maybe for one night if they had been discharged late in the day. Today is was interesting to see how few people actually made it to dinner. We were assured that the food would be eaten during the night and for lunch tomorrow, and I don't doubt it! In Michigan, my mom would be at the table by 5:45 in order for us to be able to sit together. People would sit and wait to be sure to get a seat! But, in both places, I know the people appreciate the food and it WILL be eaten!

I eluded to working on the computer earlier and I am sure you are wondering what I am working on. Well, I don't want to keep you in suspense any longer. I have a couple of projects. I am making t-shirts for us to wear when we serve others. I wanted it to have an inspirational saying with "rainbows" as a keyword. Kyara loved rainbows. We would talk about the things she would dream about before each procedure. Rainbows was ALWAYS something she listed. And Rainbows are God's promise to us. So I think it is fitting. Well, while I was researching the quotes, I ran across one that has really hit me. Not one to put on the t-shirt, but one that has grabbed me by the shoulders and shaken me. It said, "If you don't pray to God when times are good, don't pray when times are bad." Hmmm. There are many ways one could look at this. But here is what has grabbed me... How faithful am I? When Kyara was sick the hospital and home and I wanted her to get better I was praying like a crazy woman. After Kyara passed away, I prayed tons. But I look back to before Kyara's surgery and I see someone who almost never prayed. I think about the past week and realize, I have not done my bible study. I have not spent that time with my God. And when I pray, I realize I talk to God, but also to Kyara. When I think about heaven, I can't wait to see Kyara; God is in second place. I wonder if I believe in God, so that I can see her again. And I know this is not how I should be thinking. I should not love anything more than GOD! And yet, Kyara is the one I want to see first. Lord, forgive me! I have read comments about my faith, but the truth is, I am a work in progress. My Lord knows I am not perfect. Yet He loves me anyway.

Friday is Kyara's earth Birthday. We are going to prepare a meal for Hospice Atlanta. I am nervous and scared to go back to the center where Kyara took her last breath, but I look forward to serving other families and bringing some comfort (food) to them.

July

2010-07-24T21:59:00.002-04:00

Wow! Where has the summer gone? It has flown by. I figured it has been a little bit since I last wrote, so I should get back to it. I didn't realize the last time I posted was July 1st! A whole month has gone by and before you know it, the kiddos will be back in school. I don't know about anyone else, but I have enjoyed having the girls home for the summer and I am not looking forward to them going back to school. Skylar, on the other hand, can't wait for school to start!

As we get closer to school starting, we are also getting closer to another "first" in the year of "firsts." Kyara's birthday is August 6. It is especially hard because it is my birthday, as well. So how do we go about this day? At times, I would like to pretend it doesn't exist, and ignore the day, but I know that won't work. Other times, I think... well last year we did a "First Annual Dzenis/Leonard Talent Show," so maybe... the show should go on. But that doesn't seem right either. Instead, I have signed us up to make dinner at the Ronald McDonald House by Scottish Rite (the hospital Kyara spent alot of time) on August 3rd (they were booked on the 6th) and dinner for the families/patients at Hospice Atlanta on August 6th. Hospice Atlanta is the hospice center we used for Kyara. I don't know if these dinners will bring me joy or sadness, but mostly likely both emotions will show their heads at some point. I look forward to the chance to give back, but to go into these places again... it will be hard. One thing I know for sure, I have to put myself out there and not be afraid of the emotions that may or may not come.

This week in the bible study I am doing, we looked at the story of Lazirus. It reminds us that all things are done for God's glory. ALL THINGS. I am not sure how God intends to use Kyara's passing to His glory, but I pray I am doing His will through this blog. He has a purpose for all things. I am working on opening my heart to receive His will.

I would love to put some pictures up, however, I have lost my camera. Yuck! So I have been taking pictures this summer with my cellphone. If I ever figure out how to post pictures from my blackberry, I will put some up. Until then, I am going to bum pictures off my dad's camera. I hope to have some new ones up soon.

Rainbow

2010-07-01T21:43:00.002-04:00

Wow! Where does the time go? I can't believe it has been almost a month since I last posted. Summer is here and we are relaxing in the only way the Dzenis family knows how... we are staying BUSY!

So much has been happening. Skylar competed in a triathlon and did great! Swimming was not her best thing, but she made up some time on the bike and then enjoyed the run section with some new friends/competitors. I was so proud of her. I have never done a triathlon and to be honest, I don't think I will! It looked TOUGH! I will leave that up to her!

After the triathlon, we let Skylar chose where she wanted to eat lunch. She, of course, chose her Mommy's favorite place - McDonald's. I am sure many people love McDonald's, but I am not one of them. I don't like hamburgers or cheeseburgers and I think everything else taste nasty, so I have a hard time smiling when she wants to go there. In fact, I tend to throw a bit of a toddlerish tantrum. But... she did compete in a triathlon, and I was proud of her, so... off to McDonald's we went. While in line to get food, I heard some people kinda chuckling, so I turned around to see what was so funny. MY KASSEY had her shorts AND her PANTIES down around her ankles, was bending over slightly and shaking her "hiney." At the same time she is SINGING, "Hiney, Hiney, Hiney!" I couldn't help but laugh as I sternly told her to pull her pants back up! Inside I was ROLLING! Gunars was too embarrassed to say or do anything. I think shock kinda took over on him.

We have gone to the beach for another Leonard/Dzenis vacation. It is always nice to get together with the whole clan and enjoy a week together. It is crazy, loud, exciting, not so much relaxing, but a good time never-the-less. Gunars and I took the girls down to Panama City Beach for a couple of days before joining everyone at Blue Mountain Beach. We saw some tar balls, but it didn't hinder our swimming or fun in the sun. The algae was more of a problem. Sometimes it felt like we were swimming in soup. Yuck! We had an episode with a shark. That was exciting. We were out in the water, when my sister-in-law said something hard hit her leg. I figured it was probably someone else's leg, but the Gunars looked up at us all and said (in a very firm but relaxed voice) "We need to get out, now." He saw in the water, swimming between our legs what appeared to be a 2-3 foot shark. We all got out, waited for 15 minutes or so, and then went back in. I know sharks live in the ocean, but I don't like thinking about them actually swimming by my legs. Had Missy not felt it, we would have never know it was there. I wonder how often that happens?!

Vacation this year was hard. This is a year of firsts. The first vacation at the same beach house we have been to with Kyara, but this time, she is not there. I had a rough couple of days. Especially the first night. I started to get really moody the morning we were heading there. By the time we got to the house, Gunars and I were barely on speaking terms (mostly my fault, I gave him the cold shoulder all day!) The other day that was rough was the last night and the day we left. I am not sure why. Thinking back on it, I wonder if it is because the vacation was over and Kyara was still not there. I have this strange expectation sometimes, that if I just wake-up, or go to sleep, or stay in a spot long enough, she will come back. Vacation couldn't be over because Kyara had not come back yet.

While we were gone, one of the wonderful ladies that took care of Kyara at Day Surgery at Children's Healthcare of Atlanta passed away. Kay took care of Kyara every Friday for 2 years. She had ALS and after battling for the past few months, Kay is now at peace. I'd like to think Kyara helped to welcome her in Heaven. Perhaps Kyara took care of Kay this time. I went to Kay's memorial service on Tuesday. It was beautiful. Many of the nurses from CHOA were there, and it was bitter-sweet to see them again. I was amazed by how many people remembered Kyara. Even one of the anesthesiologist remembered who she was. It has been 2 years since we were at Day Surgery and it was touching (ok, I cried alot) to see how she touched so many lives. And in the same way, Kay touched my life. She took fantastic care of Kyara. She helped watch Kassey when she was a newborn and I would run to the cafeteria for some breakfast. She would slip in to our room to see if we needed anything or just to talk for a bit. As hard as it was to go to her Memorial Service, and it was HARD!, I am glad I went. I wanted her daughter to know that Kay made a difference in her patients' lives, too.

Lately I have been struggling more. I know I have said that before, but it is still true. I can be ok one minute, sad the next, or worse - numb for the rest of the day. Numbness is the worst to me. I feel completely cut off from my emotions, and the emotions of others. I shut down with girls and Gunars. It is unfair to them and it is something I am praying about and working on, but as they say, "It takes time." But, I have been praying for God to help heal my heart. Tonight we saw a rainbow that ended in our driveway. It was bright and beautiful. We sat in the car and stared at it and it slowly faded away. It reminds me that God promised to love me, comfort me, and He will never leave me. I think it may have been Kyara coming down to say hello and that she is ok. It may have been nothing more than the reflection of the sun in the raindrops, but here is the best part.... in my mind, it gets to be what I want it to be!

Carseat and Wheelchair

2010-06-07T18:42:00.002-04:00

I am trying to clean out things that we no longer need, but could be a use to others. I still have Kyara's special needs carseat. It is a Roosevelt carseat and goes up to 150 lbs. I would like to find a family that has a special needs child that would use it. I don't want to just take it to some odd corporation for it to be "borrowed" or placed. Maybe it is silly, but I want to know who I am giving it to. So, if anyone knows someone who is in need, please give them this blog and tell them to leave a comment with an email address. I would like to give it to someone who will use it.

I also have Kyara's wheelchair. It is a zippy pediatric chair with recline. Since it has her name on it, I am not sure what to do with it. I am thinking about giving it back to wheelchair place so they can use it as a loaner, but if someone needed it, I would prefer that.

I have mixed emotions when it comes to getting rid of these things. I am sad because they were Kyara's and I don't want to get rid of anything that was hers. At the same time, I don't want to keep them. They are of NO use to us, they could be useful for someone else, and this is not how I want to remember Kyara. So, I really don't understand why have this tugging that says "Hold on to it." Why has it taken me so long to put it out there? Because it was hers. But, knowing it will help someone else. Knowing the COST involved with special needs equipment, it will be a blessing to find these items a new home.

Changing

2010-05-28T14:06:00.002-04:00

Gunars and I decided to paint the interior of our house. This past spring, we had a new roof put on, new gutters, and painted the shutters. We now are getting to the inside. When I first thought about this, I felt like it would be a good idea. We are painting all of the rooms, Kyara's room, too. I thought this might me healing. A fresh start. I don't want to walk by her room and think of her lying in her hospital bed. I want a new beginning to a new life we are going to have to lead. Nothing a little paint can't fix, right? Wrong. You can't paint over a broken heart and expect it to mend. Sometimes I think I am delusional. If you recall, a year ago, I believed that if we got the heck out of Michigan and came to Atlanta, Kyara would be healed. I have this idea that if I don't let my mind wander towards the grief I feel, then it will all go away. And if I paint my house, life will begin again. It doesn't work that way.

I find that I am struggling more now than I was a month or 2 ago. I feel like I have all these walls up so that I won't feel sad. Unfortunately, it goes the other way, too. I don't feel happy either. I have a hard time enjoying life, my girls, Gunars, everything. I went to dinner and movie with ladies from the church last night and although it was nice to get out, I couldn't allow myself to enjoy it. I couldn't bring down the walls and really join conversations or start conversations. This was never my strong suit, I guess I'm a bit shy, but I long for friends and that ability to just let loose.

Kassey reminds me so much of Kyara that it is painful. At times, I feel like I resent her for not being Kyara. What a terrible thing! I love Kassey very much and I hate feeling that way, but it is the truth. And, since this is my blog, I am going to write how I am feeling. Kassey is very strong-willed, she has mannerism that match Kyara to a "T". The way she holds her arms back when she runs, the way she wiped her face with her hand the other day, her love for books, and asking me over and over "why?" to EVERYTHING remind me of Kyara. My mom has said to me that Kassey has been such a blessing. To have her here while we have gone through this nightmare, to be able to laugh at/with her, and to be able to enjoy her being...well, two. Yes, but at the same time, it is torture. I know that is not a popular thing to say. I don't want the wrong idea to get out... I wouldn't want it any other way.... well, that's not true, I would just want my healthy Kyara here, too. But I love and adore Kassey, through the pain.

Skylar finishes school today. No longer a 2nd grader, she is moving up to 3rd grade! She is officially halfway through elementary school! Wow! She had soccer camp this past week and although she said she enjoyed each day, she did not like it being EVERYDAY! Well, that is fine. I am not going to push her into doing soccer just because I want her too. If she wants to do a different sport or activity, that would work. But she must DO something! I don't want her sitting around watching TV all day.

This summer we have decided to impose a no electronics rule. (Thank you, Lopers! I am sure Skylar would like to thank you, too :) ) From after breakfast until dinner, no electronics will be on at our house. This means no tv, computer, wii, didj, etc. Now, I will have to make an exception during the World Cup, because Mommy wants to watch it! But otherwise, unless it is raining, we are going to be active, reading, and sightseeing. This is my goal... we will see how it works.

This weekend is our Leonard Family reunion in Eastman, Georgia. This is my dad's side of the family and I am looking forward to seeing everyone. I don't get to see my grandparents, aunts, uncles, and cousins very often anymore so I am excited to spend the day with them.
This weekend is also Memorial Day weekend. I'd like to thank all of our verterans and servicemen/women who protect our nation. They live and die for our freedom. I would also like to thank their families for the sacrifices they make while their mothers, fathers, sons, daughters are deployed.

I thank God for the freedom we have in our nation. I thank Him for the bravery of the men and women who make that possible. I pray for peace in my house and in my heart. I lift up my pain to God and I am allowing Him to lead us in the right (His) direction.

Skylar's 8th Birthday!

2010-05-18T21:39:00.002-04:00

I have some pictures, but I have NO IDEA how to download them from my mobile phone to this blog. I will work on it and post some.

We went to the driving range today with Bunny and Pop for Skylar's birthday today. I think everyone enjoyed it. Kassey even tried to hit a few. Skylar is doing well. Sometimes she hits the "big ball" (earth) instead of the little ball, but hey... not bad for just beginning! I am just amazed that she is already 8. I know, everyone always says, "Boy, it goes so fast!" I was warned... take lots of pictures because before you know it she will be grown. Well, we are moving at warp speed! It seems like just yesterday Gunars and I were in line at the movies to see I Am Sam when I decided I had better go to the restroom before we got seats. Well, we never got to the seats because my water broke and there was meconium (when the baby poops, which could be a sign of distress) in it. So we went directly to the hospital, right? NO, we headed straight to my parents' house so I could change underwear! Of course, clean undies only lasted about 2 minutes... I know too much information. Skylar will be horrified when she reads this :)

Anyway, 9 hours and one epidural later, Skylar Rose Dzenis was born at 4:50am and Gunars and I were thrilled and scared to death at the same time. I think the scariest moment was when they put us in the car to go home and we drove off! WE were now responsible for this precious, perfect, completely dependent baby; and Gunars had never even changed a diaper before! What were they thinking, letting us leave like that??? Turns out, Skylar has been a wonderful daughter and Gunars is a darn good daddy, too.

I don't know why I decided to bore you with that story, but, there it is. Each of my girls has a completely different birth story. It seems to me that their births has mirrored their personalities in ways. Skylar was easy, pretty calm, no biggie. Ok, the water breaking at the theater part was a little exciting, but the actual birth, was very low key. My midwife ate a popscicle during it (luckily she finished in time to wash her hands and catch!) I had the epidural and didn't feel a thing! Very easy-going. That is Skylar. Kyara was 8 days late, then born in 45 minutes on the triage table. That was Kyara. She was head strong and wanted to do things her way. I smile as I write that. Strong-willed. That is what a nurse told me once. Kassey's birth was a combination of the 2 previous. She was 5 days late and I started feeling contractions at the movies. I was sure she would go fast, too, since Kyara had been so quick. Gunars and I headed to the hospital and after 2 hours of monitoring and laps around the hospital and alot of stairs (the next day my legs were so sore from skipping up stairs trying to get the labor to COME ON!), we were sent home. 3 hours and no sleep later, I woke Gunars up and told him I wanted to go back to the hospital. Kassey finally arrived 4 hours later.

There I go again with the boring birth stories. Sorry.

Back to Skylar. She has been amazing through the past 8 years. Skylar has been through alot. She has seen alot. She was with us when Kyara drank the chemical that injured her esophagus. She saw Kyara's tongue turn black and swell out of her mouth. She watched her sister go through hospitalization after hospitalization. She has seen her intubated more times than I want to count. She has learned how to use a g-tube and learned that it is not a big deal. She has seen her strong-willed, energetic little sister fight to lead a normal life. She is learning to deal with the death of her sister and best friend. And Skylar has done these things with amazing grace. She is teaching Kassey through her example everyday how to be a better person.

Yesterday we made cookies for an older couple who live in our neighborhood. Skylar made a get well card, because the gentleman has ALS. This is a disease that has taken over his body, mind, emotions... life. He is now wheelchair bound and dependent on his wife and friends for everything. As we went in to see him, he began to cry. His wife explained that he isn't able to control his feelings because of the disease, but she said it softly and really... to me. At seeing this gentleman, who I have seen outside in his yard for the past 10 years in this state, I was brought to tears of my own. So, my neighbor and I cried. After regaining our composure, we had a nice visit for a bit and then we said our goodbyes. Skylar and Kassey were very good while we were there and joined in the conversation quite a bit... ok, Kassey played with the dog in the window, but she was entertaining. So today I asked Skylar what she thought about our visit. She was concerned as to why I was crying. I explained that the gentleman reminded me of Kyara. He was once a vibrant, active man and now his body is shutting down, much like Kyara's body shut down. She accepted this. Then she asked about why the gentleman was crying. I asked her if she remembers how Kyara used to cry alot after her anoxic brain injury. And how she couldn't help it. Well, it is alot like that. I think he is unable to control his crying because of the disease he has. This made perfect sense to Skylar and she said she would like to visit them again. I am so glad. She has also told me she wants to make cookies for some other people we know who are going through some harder times. And she is asking when we are going to do dinner for the Ronald McDonald House in Atlanta. But, she told me tonight, "I know you are going to cry when we go." Yes, Skylar, you are probably right. Sometimes, a cry is a good cry, though.

I don't know how I have gotten off on so many different tangents tonight. I did want to mention, Skylar had her first spend the night party this past weekend, and Gunars and I survived! We went to the movies to see "The Spy Next Door" and I cried (do you see a theme? I seem to cry easily!) "The Spy Next Door" is a Jackie Chan movie for kids. It is ridiculous for me to cry in this movie. I am such a sap! We took Skylar to the Fabulous Fox Theater in Atlanta to see Mary Poppins (which is her favorite movie). This weekend we are having family over to celebrate Skylar's birthday. So, Skylar has not had just a birthday, but a birthweek. Well, good for her. She is a huge blessing and I thank God for allowing her to be in my life!

HAPPY 8TH BIRTHDAY, SKYLAR!!!!

How Many Children Do You Have?

2010-05-11T22:06:00.002-04:00

Recently I have been getting out a little more and meeting new people. A questions that always seems to come up (which is a normal "get to know you" question) is "Do you have any children?" My answer of course is "Yes." Follow up is almost automatic. "How many?" This is a very difficult question for me to answer and one that brings tears to my eyes everytime. I know these new people who have never met me probably think..."What is with this weirdo?" while I hesitate to answer. How many children do I have? Well... do you want a simple number as of the present? That would be the easiest way to answer. "I have two girls... Skylar, who is 7 and Kassey, who is 2." But, really I have 3 beautiful girls... one just happens to be an angel now. Am I not suppose to mention her? What a conversation ender it is to mention your daughter passed away almost 2 months ago. Talk about akward silence following that piece of information! I don't want Kyara's memory to be forgotten. I want people to talk to me about her. Yes, I will probably cry. Yes, it will be difficult. But it is also such a blessing to have people ask about her. What she was like. What she liked to do. How she blessed my life for 5 and 1/2 years. How she brought me back to God. She was/is amazing. Those who knew her before the cardiac arrest, I am sure have fond memories of her. Mention them to me! Please don't think she should not be mentioned so that I can be protected from the pain. She was one of my babies and knowing how she touched others' lives brings me joy.

So, back to what I first started this blog with... What to say when someone asks me how many children I have. I am not sure how to answer. She is still my daughter. She is just with her Almighty Father, now. I think it will depend on who is asking as to how I will answer. The cashier at the grocery store will probably get the "2" answer. Someone I will be spending more time with, and creating a lasting relationship with, may get a "2 girls and a beautiful angel" answer. I think it also depends on my emotional state at the time. If I know I am already about to start wailing just thinking about her, I may skip any conversation and go find some tissues!!!

Skylar is turning 8 years old next week. I can't believe it! We are having a couple of girls spend the night on Friday and then a few more over on Saturday for movie and pizza. Skylar's first spend-the-night party. YIKES!! I am not sure I am ready for this! Skylar is also finishing her soccer season on Sunday. Alot going on this weekend! School is almost out, and I am not sure where the time has gone. It seems like school just started.

Kassey is as crazy as ever. She is a climbing maniac! She loves to climb on everything. Jump on trampolines, run in the driveway, go on the zip-line. She is all over it all! She thinks she is as big as Skylar.

Gunars is playing basketball and soccer during the week which has given him a good outlet to burn off some emotions and stress. We are also doing P90X. For those of you who know what that is, pray for us!! For those of you who don't know... pray for us! It is an extreme workout for 90 days. I am hoping it will get me in shape to run the Peachtree Road Race on July 4th, but considering I ran 2 miles the other day and had to stop 3-4 times, I have a LONG way to go! As I said...pray for us!

I would also like to thank everyone for the delicious meals that were given to us after Kyara passed away. It was so nice to not have to think about cooking. Sometimes I had a hard time thinking about showering, but I wouldn't dare ask anyone to come and scrub my back! Thank you so much for helping us in so many tremendous ways. Thank you to all who have donated to Children's Healthcare of Atlanta in Kyara's memory. We know the children at Scottish Rite benefit from the donations.

Change in Music

2010-05-07T10:53:00.003-04:00

Short post, because I am suppose to be cleaning the house. Shhh! Don't tell!

I changed the music to reflect some music that has really touched me. I think it represents how I am feeling and what I believe. I hope you enjoy the change... Check out the songs!

Home and Back to Routine

2010-04-23T15:32:00.004-04:00

Waiting for the Disaster Show at Univeral Studios. Kassey cracks me up!

In front of the future Harry Potter World at Univeral Studios-Islands of Adventure

Universal Studios - Island of Adventure

Happy Easter! Skylar decorated her cookie with our Gainesville Friends!

Kassey couldn't wait to take a bite!

Disney, SeaWorld, Universal Studios, and Gainesville (Home of the GATORS! GO UF!), was fun! We have been home for almost 2 weeks now and we are getting back into our routine. Things are getting back to "normal", but things are not "normal" anymore. They haven't been "normal" in a long time. At some point, we have to sit down and redefine what "normal" is for our family. Kyara is no longer with us, and that is NOT normal. Skylar and Kassey have lost their sister and that is NOT normal. Gunars and I have outlived one of our children by MANY YEARS (God willing) and that is NOT normal. And yet, life still goes on. we still have soccer, we still go swimming, we still laugh and play in the back yard. We still do "normal" things. For me, as I go through these activities, I have an emptyness that weighs on my heart and chest. I smile and play with the girls, but the weight does not go away. I think that for a long time I was in "the battle." No time to reflect, I just wanted to do what was best for Kyara, the girls, and Gunars. No time to really absorb the loss of our old Kyara, I was too busy trying to take care of the new Kyara. And now that our prayers for healing have been answered (although I wish it had been here on earth), I have found time to think through the past 18 months. New emotions arise stronger... Anger is among the strongest right now. And I find I don't always direct my anger in the right ways, I have become quite moody and hard to deal with. Poor Skylar seems to get most of it. Don't take this wrong, I am in NO WAY abusive. It is more silly things. For example, we have always let the girls pick out their own clothes. Lately, I have decided that Skylar needs to match her clothes better. I would love for her to wear the clothes a 5 year old would wear. She is NOT liking my ideas and we seem to fight over clothing alot. Silly... why am I doing this? Not really sure. Maybe I want her to look like a 5 year old to remind me of a healthy, living Kyara. Maybe its because I don't want her to look like we have forgotten about her (because we haven't!). I don't know.

Here is what I do know. Now that things are settling down, I am having a harder time. Now that I am having a harder time, I need to rely on God's strength to help me through. He is there for us. He has never left us. And I believe He has healed Kyara in the way only He could.

Three weeks

2010-04-09T22:15:00.000-04:00

It has been three weeks since Kyara grew her angel wings. Sometimes I feel ok with knowing she is healed. I feel happy for her to be playing in heaven. Other times... I am mad. Not at God, as some have suggested, but at Kyara's situation. I am mad at myself for not stopping her from drinking the chemical when she was little. For not knowing that she would have some many problems from the surgery. For not knowing she would have the cardiac arrest. For not being able to make her better. I know these are not reasonable things, but it doesn't stop them from ruNning through my head. They help cause the knot that is constantly in my stomach, the feeling that my heart is no longer whole. This is not the path I would have chosen for Kyara... But then again, I am not God. He is faithful, and He knows the plans He has for each of us. Plans to better us, not to harm us.

So for the past week we have taken a triP with Skylar and Kassey. We went to Gainesville and stayed with friends, kayaked Rainbow River (and saw a Gator!), went to a butterfly garden and a Gator Lacross game. That was Saturday. Then we headed to Orlando to Universal Studios and Islands of Adventure,Disney Magic Kingdom, Epcot, and Hollywood Studios, and Seaworld. IT has been a busy week! We are now headed back to Gainesville to see the Orange and Blue game tomorrow. I will write more later, but since I am writing this on my blackberry (crackberry?), my thumbs seem to be cramping!

Kyara's Eulogy

2010-03-28T21:21:00.002-04:00

I have been asked by several people to please post Kyara's eulogy that Gunars did at her funeral. I must say, maybe I am biased, but I think he did a fantastic job. I know I could not have stood up there, kept my composure and discuss Kyara's life in front of everyone.

So here it is...

"To say that we have suffered would be an understatement. But what may not be so clear, is that if this is the way it was to end, I wouldn’t change a thing. Kyara has enriched our lives in such an amazing way that she truly was an earth angel. Our lives have experienced such deep emotions that we can begin to feel and appreciate the beauty of life.

Nothing about Kyara Dawn was average or usual. It starts with her birth. She was 8 days past her due date and she decided to be born on her mom’s birthday, August 6. Skylar Rose and I happened to go with Genie to the hospital on that day because of a scheduled Doctors appointment. Genie started to go into labor so they sent her to the Triage room with other patients. We were used to long deliveries and had nothing to worry about. When my dad came to get Skylar, I went to the Triage room mentally prepared for the marathon that was coming. I heard a woman screaming in horrible pain. I felt bad that Genie had to be in a room with a screaming woman. That woman screaming was Genie and she was going through a “precipitous” birth. Kyara was coming, and she was coming now! Genie pushed 4 times and Kyara was born. This is a very painful way of delivering a baby and Genie was not shy about screaming. After Kyara was born and everybody was ok, I told Genie I was going to get some water. She thought it was for her. In reality, I was about to pass out and didn’t want Genie to worry about me. I turned the corner, told a nurse I was about to pass out, and… I passed out.

Kyara came to us the way she left us, shockingly.

The truth is that Kyara looked at death in the face several times and said, “not yet”. We all know that death has an undefeated record, but Kyara took the game of life into quintuple overtime.

When Kyara was 2 years old she drank a chemical, potassium hydroxide. This is a nasty chemical that eats your skin. The Doctors warned us that she may not make it. She was in a medically induced coma for one week. She could’ve left us then. But she wasn’t ready. Overtime.

We were in an Intensive Care Unit for another 7 weeks. During this time there was a perforation of her stomach wall and she needed emergency surgery. She took death to double overtime. “Not yet”, she must have said. Those were hard times, but she won. Her esophagus was damaged and she couldn’t eat solid foods. She had to be fed through a g-tube. But she was alive and full of life. We felt invincible and so happy.

She went to the hospital once a week for an outpatient dilation of the esophagus that kept scarring down. The Doctor would open it up so her saliva could go down.

None of this could slow her down. She knew the routine of her outpatient dilation so well that she could do all the pre-op testing herself, like take her weight, blood pressure, temperature, and the order of all her medications. The regular nurse would give Kyara the equipment and Kyara would do it all. When a new nurse would come, she would tell her how it had to be done.

She was an orange belt in karate. During karate sensei instructs the students on the procedure of an attack and there is a lot of repetition. He would say, 1, 2, 1, 2, 1, 2. Kyara raised her hand one time when she was a beginner. Uh, oh, what was Kyara going to say?! Nobody questions sensei during class. She asked him, “When are you going to say 3?”.

Kyara played soccer. She told us before a soccer game that she would score 10 goals. Considering she was 3 years old and most kids don’t understand the object of the game, her comment was funny. Taking into account that the game was only 20 minutes she would have to score every two minutes, almost impossible. But like everything she did, she was amazing. She was determined to score 10 goals. After every goal she would look at us and count out loud her count. “7”, “8”. It was a little embarrassing, but we were proud of her too.

She also loved to read. While her Pre-K class was learning the letters of the alphabet she was reading Skylar’s 1st grade sight words. She was also able to do simple math. She kept talking about all her boyfriends. She said that she had 7 boyfriends and apparently one of them regularly pushed her while she was in the tire swing during recess. Pre-K seemed a little young for me to be worrying about boyfriends. But this was Kyara’s world, I was just living in it.

I remember Kyara wanted to eat pizza more than anything else.

When she was 4 years old, we had to do surgery to completely remove the esophagus and raise her stomach. During this complicated surgery we were told that her esophagus was very scarred and attached to her aorta. Once again, she was not ready to leave us and took death to triple overtime. And she survived… again.

During her long and difficult recovery Kyara was nothing short of incredible. They had her very heavily medicated, enough to put an adult to sleep. In fact she was under such a heavy dose of medication that Kyara was intubated, she had a tube down into her lungs to help her breathe. But she was awake and playing Candyland! Doctors would come and into her room and be shocked that she was not only awake but coherent. She also figured out that if she would pretend to be asleep when a doctor or nurse would come into her room that they would leave her alone. She played possum often and very well.

Before she was allowed to leave the hospital she had to see a speech therapist. We were ready to go back home after 6 weeks of being in the hospital and needed her to show the therapist that she was fine. Now, Kyara liked to talk… a lot. Her vocabulary was very high. She could talk your ear off too and liked to ask many questions. Imagine Genie’s surprise when Kyara would not talk and even pretended the Therapist was not in her room by staring at the wall. When the therapist left, Kyara told Genie that she didn’t talk because the Speech Therapist looked “crazy”. She would also race down the hospital hallways in a red tricycle with the Physical Therapist chasing behind her. Only Kyara ….

Kyara finally came home right before Christmas 2008, and she got to eat pizza! Yes! What a happy time. We were all home, together and healthy. Kyara told me she even saved Kassey Rain’s life twice during this time. Apparently, Kassey was eating leaves and Kyara felt she would choke on them so she stuck her fingers in Kassey mouth and took out all the leaves, twice! Thank you Kyara!

Just one more outpatient procedure and we would be done. God obviously had other plans, and during the outpatient procedure she suffered an anoxic brain injury, 45 minutes of not enough oxygen. She did survive, though. “Not yet” she must have said. Quadruple overtime. During the next 6 months in the Intensive Care Unit and Rehab Center she developed an air pocket in the intestine wall that required immediate emergency surgery. Quintuple overtime.

Your determination to live is amazingly unusual, but that is just the way you have always been.

Nothing about Kyara has ever been normal. When she was born, she had a lot of hair on top of her head and nowhere else. Her teeth didn’t come until she was 2. Her favorite color was yellow. Yellow? I thought all little girls liked pink and purple. She insisted that her eyes were the color of French Onion Soup. She explained to me, when she was 4, that leaves change color when the chlorophyll falls out, I still don’t know where she got that information. It was impressive that she could say and remember “chlorophyll”. It was impressive that she could repeat that sentence. But most impressive of all, she UNDERSTOOD what she was saying. To be honest, I don’t know if that’s what really happens to leaves, but I know better than to second guess what Kyara said. Kyara understood so many things, she had a natural instinct and intelligence that was unusual. She absolutely was more intelligent than me.

Kyara has helped us feel the complete range of emotions to their fullest extent. We have felt emotional pain that was physical like we didn’t know possible. We have experienced sadness, terror, fear, rage, guilt, anger, despair, anxiety, and now grief to the fullest meaning of each word. We have also had some of the most wonderful emotions thanks to Kyara. I have never loved the way I loved Kyara. We have felt the boundless love from her school, our community, and our neighbors. Most of Kyara’s doctors, nurses and therapists have been fantastic. Humans are basically good people who try to help each other. Kyara has made me laugh several times so hard that my stomach muscles hurt and I couldn’t breathe while tears poured out of my eyes. I have never laughed so hard. When Kyara was happy it was contagious. She had the biggest, brightest, most beautiful smile. When Kyara laughed everybody laughed. We are so proud of Kyara for everything that she has done. Her determination and focus in what ever she did was unparalleled. The good times with Kyara were so pure, so deep and so majestic it redefines the meaning of ecstasy. Kyara has helped us form friendships and meet some very incredible people. Kyara has also brought us closer to God. We are, without a doubt, better people because Kyara touched our lives in such a profound way. Just like one needs hunger to appreciate food, we will appreciate and live life while having felt many emotions to their fullest extent.

Unlike birds that have to learn how to fly, when they put the angel wings on Kyara, she already knew how to use them. She was an earth angel. She will soon have a play date with a butterfly in a meadow of beautiful flowers. She will have a rose with her at dawn and she will laugh in the rain."

Take care and God bless you.

Taking Toys to Children's Healthcare of Atlanta

2010-03-26T21:24:00.003-04:00

Yesterday my mom and Gunars' dad help us organize all of the toys that were donated at Kyara's service to take up to Children's Healthcare of Atlanta (Scottish Rite). I was shocked and amazed by the amount of toys, books, dvds, etc given. It was a great feeling to load up the entire bed of the truck and have more in the cab of the truck on the way up. It took 4 wagons, loaded with 4 boxes each, to get all the goodies into the doors. Thank you all so much for your donations!!! I pray these toys will light up the eyes of some of the kids at Scottish Rite.

Thank you!

Kyara's Celebration

2010-03-24T09:15:00.003-04:00

Yesterday was perfect, as perfect as it can be when you are missing your daughter. The amount of love and support we received was amazing. We are thrilled with the toys that we will donate to Children's Healthcare in Atlanta. Kyara played with the toys so much while we were there, we feel it is the perfect way to remember her.

She looked like a beautiful angel. I was pleased that she still looked innocent and like a little girl. She was not heavily made up, she look...perfect.

The service was great, too. As much of it as I could hear, anyway. Kassey wanted to play with the toys and touch Kyara's picture, so she was a bit...noisy. Gunars read a euology that was awesome. Really explained Kyara's life and how much impact she has had on ours. Reverend Mark Westmoreland's sermon and Kristen's scripture readings were right on.

After the service we released doves and then went to Kyara's "birthday celebration." Skylar thought this idea up. We were discussing whether Kyara would age in heaven. I said, "I don't know." She asked, "Will she have a birthday?" I said we can still celebrate her birthday. And then after thinking about it for a second, I said, "You know, it is like she has been born again, just in Heaven. She has moved from this world and is now in her Heavenly Body. Skylar said, "So it is like she has two birthdays." Exactly. So from then on, we decided the reception after the service would be referred to as a Birthday Party. We had yellow, pink, and purple balloons. The tables were covered in the same colors and we tried to make it a more festive scene. This is more Kyara's style. It represents her much better than everyone sitting around sad. I hope she enjoyed it.

I thank God everyday for the 5 years we had with Kyara. I thank Him for the new relationships that have been born through Kyara's tragedy. I thank Him for the strength to see the light during the past year and a half. I would like to thank you for reading this blog, posting comments that have kept us going, and for helping celebrate Kyara's life (whether you were there, sent me a message, prayed for us to have strength, or just thought of Kyara).

Meal Arrangements...

2010-03-21T20:58:00.003-04:00

My wonderful sister-in-law, Missy, wrote this...

My name is Missy Leonard. I am married to Genie's brother, Allen. There have been a large number of people to ask me how they can help Genie & Gunars right now. Right now, providing meals for their family would be very helpful. I have created a Care Calendar to coordinate meals for them. If you would like to provide a meal for them, visit http://www.carecalendar.org/logon/35426 and enter the following information in the appropriate spaces:

CALENDAR ID : 35426
SECURITY CODE : 6517

If you have trouble with this, please contact me either on email (missy.leonard@comcast.net, or phone 770.461.0238)

Thank you so very much!

Kyara's Obituary

2010-03-21T10:53:00.002-04:00

We have been working on getting arrangements in place. This is the obituary as we are sending it into the papers so it can be there for tomorrow's printing. We would like to sincerely thank everyone who has been there for us through the past year and a half. We truely enjoy reading your posts and knowing that Kyara has touch so many lives. Her life was short, but God helped her move mountains with her story.

Kyara Dawn Dzenis
8/6/2004 - 3/19/2010

Our beloved Kyara Dawn Dzenis, 5, of Sharpsburg, GA passed away on March 19, 2010 and is now playing with the angels in heaven.

She was born on August 6, 2004 at Southern Regional Hospital in Riverdale, GA. She went to school at Willis Road Elementary for Pre-K and then Poplar Road Elementary in Coweta County.

Kyara was an inspiration to all that knew her. She was brave, tough, and determined. She was an orange belt in karate, a soccer player and liked to read and write. She was very sweet and loving. To know Kyara was to be entangled in her web of charm. It was a blessing to have been a part of Kyara’s life.

Kyara is survived by her parents Gunars and Genie, and her 2 sisters, Skylar Rose and Kassandra Rain, all of Sharpsburg, GA; grandparents Mike and Peggy Leonard of Fayetteville, GA, Eriks Dzenis of Sharpsburg, GA and Luz Estela Robledo of Duluth, GA; great-grandparents Betty and Merle Leonard of Eastman, GA and Angelyn Screws of Columbus, GA; preceded in death by great-grandfather William A. Screws of Columbus, GA. Additionally, Kyara is survived by numerous loving aunts, uncles, cousins and incredibly caring and supportive friends.

A celebration of Kyara’s life will be held at 3:00 pm, March 23, 2010 at Fayetteville First United Methodist Church 175 E. Lanier Ave. Fayetteville, GA 30214. A viewing will be held one hour prior to the funeral service beginning at 2:00 pm. All are invited to join Kyara’s family and friends in refreshments and fellowship immediately following the service in the church’s fellowship hall.

In lieu of flowers, the family is requesting donations of DVDs, blank journals or toys (please see guidelines at http://www.choa.org/default.aspx?id=4178) that will be given in Kyara’s name to the Children’s Healthcare of Atlanta for its patients. There will be an area at Kyara’s services to drop off donations.

We love you, Kyara!

Planning Arrangements

2010-03-20T19:35:00.002-04:00

We are working on arrangements for Kyara's service. We hope to have the service Tuesday, March 22, but we still have to make sure it will work with both the funeral home and our church. The service will be held at Fayetteville First United Methodist Church in Fayetteville, Georgia. As for visitation and such... we are thinking of having some time before the service for viewing and would like to invite everyone to join us in a celebration of her life immediately following her service at the church. Exact details will follow as we get them ironed out. I will know more tomorrow after meeting with both the funeral home and the church.

Today has been a better day than I expected it would be. We have tried to keep things as normal as possible for the girls. Skylar played in her soccer game this afternoon and played FANTASTICALLY! She said she thinks Kyara helped her...I think so, too. Skylar is now at a birthday party where they are having "makeovers." I received at text picture (Thank you, Marcia!) and she looked like she was having a blast. Kassey is hanging with Gunars and me while we get errands done and details figured out. We ate lunch with one of my brothers (Matt) and his family, my parents, and Gunars' mom (Luz Estela) and it was nice to just relax a little and enjoy everyone's company.

Playing with the Angels

2010-03-19T20:54:00.002-04:00

At 6:40 this evening, Kyara grew her angel wings. She is playing and running, talking and laughing with her Heavenly Father and the other angels.

Thank you for your continued prayers and support. We already miss her terribly, but know she is at peace and is finally HEALED!

Sleep-Over

2010-03-19T15:37:00.002-04:00

Gunars, Skylar and Kassey spent the night with Kyara and I last night. I loved having the family together again. Skylar, Kassey and I slept on a air mattress while Gunars slept with Kyara in her bed. I can't say anyone got great sleep, but I think it will make for a good memory in the future. Our air mattress partially deflated half-way through the night, and since I am the heaviest of the three of us, Kassey and Skylar ended up sleeping on top of me. I would wake up and move everyone around, but as Skylar said, "There is a 'hole' I keep getting rolled in." I guess I am the "hole." :)

Kyara's coloring has not been good today. She is very pale and has a bluish-grey look to her. At times her lips blanch to the same color or an even bluer color than her skin. She goes through stages of breathing easily to struggling where she is only breathing about 4 times a minute. We have been told these are signs that she is getting closer to being at peace. Although noone can tell us exactly how much long we get to have her here, they have said it could be 30 minutes to a couple of days. Either way it is not long.

This process has been extremely difficult. The only thing that keeps me sane is the knowledge that she will be healed and at peace in Heaven with God and that I will see her again. The timeswhen I let doubt enter my mind are the times I break down. It is hard not to question what we cannot see, but that is what faith is. And I remind myself that God is true to His word and I must believe in it. Then I wipe away the tears, give Kyara hugs and kisses, tell her how much I love her, and smile.

Scary Episode

2010-03-18T13:19:00.002-04:00

Last night was calmer than the night before. I got a couple of "naps" inbetween nurses coming in to check on Kyara or to give medications. I slept with her in the air bed which changes pressure in its air chambers every couple of minutes to decrease chances of bed sores. This is good for her, not so comfortable to sleep on for me. Everytime I would get a little comfortable, the pressure would shift. That's ok though, I was more than happy to have the discomfort if it meant I got to cuddle with Kyara. She slept well, so that was good. This morning the nurse came in to take a temperature (they were unable to get a reading yesterday, she kept reading "Low"). This morning her temperature was 93.9. Ok, normal is 98.6. And it is amazing that she is warmer today than yesterday. We are attributing this to her neurologic instability and signs of her body not able to work right anymore.

Ms. Michelle from Willis Road came to visit this morning and while she was here we got Kyara up and sit in Ms. Michelle's lap. Kyara started to sound gurgly (?) so I suggested I take her back to sit her up. As soon as I got her up, she started vomiting and had trying to cough/gasp for air. My dad was here to, so after a minute when she still had not cleared it all and was starting to lose her color, I told him to get the nurse. It was very scary to watch her turn grayish-blue in front of my eyes and know that this could be IT. I held on to her and told her how much I loved her, over and over again. Beth, Kyara's home nurse was here and immediately came in and told me to move over to the bed where they could get some oxygen on her and suction. by the time we got over there, Kyara's color started to return and she finally made some good coughing sound. They still suctioned out ALOT of thick, thick mucus out. The thought is that she had a mucus plug that she was unable to breath around and that is why she turned blue. It was scary. I know that she is going to leave us one day soon, but I was not quite ready for today to be the day. I don't know if you ever get ready for that day. No matter how much we prepare ourselves, when we are facing it, I was scared.

Gunars, Skylar, and Kassey are going to come up this afternoon. The plan is for them to spend the night tonight. I can't wait to hold them! Thank you for the prayers and well wishes! They mean the world to us!

Hospice Atlanta

2010-03-17T19:23:00.002-04:00

This is a hard post to write...

Over the past month Kyara has been struggling more and more. She had the upper respiratory infection and since that time, other body systems have been shutting down. Her poor body has been through the wringer. She has been the strongest, most awe-inspiring person I have ever seen. It is amazing how much she (God working through her) has changed me in the past year and a half. After talking with numerous doctors, we knew we had limited time left together. After a lot of talking, praying, crying, and more praying, we decided to use Hospice Atlanta to help us give Kyara the gift of peace, comfort, and the ultimate healing. We kept Kyara at home for as long as we could, and decided to bring her to the Hospice Atlanta Center on Tuesday. I am staying up here with her and Gunars is coming and going while staying with Skylar and Kassey at home.

Prayers for Kyara's comfort are welcome and appreciated.

Nurses Came Today

2010-03-11T21:24:00.002-05:00

Kyara's nurses came by today to check on her. She is still having all of the same symptoms and now she has crackles (sounds in her chest from junk) and diminished breath sounds on both lungs.

Skylar is having a harder time coping with all that is happening with Kyara. She is a tough cookie, but she is having to see and go through more than any 7 year old should.

Things are rough, but I trust in God's plans. He only wants the best for us, and we only want the best for our girls.

The Latest

2010-03-06T21:14:00.002-05:00

Kyara is still not doing well. She now also has an urinary tract infection on top of everything else. I changed her diaper the other morning and the smell was so strong it almost knocked me over. She is having a slimy, yucky discharge that we are told is characteristic of a UTI. Normally it is seen in the catheter tubes if a person is catherized or one might notice a "cloudy" urine when they pee in a toilet. Kyara is still not peeing much, so we have to wonder about kidneys.

We are doing our best to keep things as normal as possible for Skylar and Kassey. Skylar had her first soccer game this weekend and I "coached." Really all I did was stand on the sideline and sub players in and out of the game. But it was fun! Skylar played great! We then took the girls to the local pool (yes, it is indoor and heated!) Kassey is LOVING the water. She is thrilled to show me how she can dunk her head under the water and let go of the side. She loves jumping off the side, whether or not anyone is looking. That is a little scary! She doesn't know how to swim, yet, so we have to watch her closely. She is a little daredevil! Skylar is a fish, so she loves going to the pool. Kyara and I hung out and watched today.

Thank you all for keeping up with our family.

Still Vomiting

2010-02-26T14:11:00.003-05:00

No school this week for Kyara. She is still vomiting and she is still weak. Her heart rate is much higher than normal and she has crackles (yucky sounds) in her lungs. She is not peeing as much and her poops are full of mucus.

Still Sick

2010-02-18T19:19:00.002-05:00

Skylar is better, she seemed to have the 8 hour vomiting bug. Kassey is better, but still has a cough and a little runny nose. Of course, Kyara is the one we are really worried about. Not that the other girls are not important, but for them a virus is just that...a virus. It comes, it will go, and they will be fine. Annoying while it is here, but really not a big deal.

Kyara is still sick. She is sleeping about 20-22 hours a day. She has a terrible cough and congestion. She is coughing so hard that it makes her vomit. I was up the other night suctioning her a ton. Even with the suction machine, I still had to change her sheets and her clothes 3-4 times during the night. I suctioned 100-200 ml each time she would vomit. Considering she doesn't get food in her stomach (because she is J-tube fed into her intestines), this is alot of fluid. Kyara's nurse came to see her the on Tuesday and said her lung sounds were diminshed on the left side and that she sounds "junky". Pneumonia is a concern. She is not peeing as much and she appears more swollen or "puffy" to me than before.

It is excruciating to watch her gasp for air when she is coughing and gagging. She is struggling.

The Sick House

2010-02-15T09:45:00.004-05:00

Kassey's 2nd Birthday Party Pictures!

Starting last week, Kyara has had an upper respiratory infection. I noticed her coughing more at the beginning of the week and by Thursday, the school was calling to say that she had slept through the entire morning (not at ALL like her!) and they were concerned. So I went to the school to pick her up. I talked to her home nurse and she came over to see Kyara that afternoon. She said it was an upper respiratory infection and gave us some instructions. Since it seems to be viral, antibiotics are not going to work. Kyara has not improved since then. In fact, I think she looks worse. She is pale, still sleeping all day and night, when she is not coughing so hard she is throwing up. I am changing her shirts many times a day because of how much she is throwing up. My concern is that she is not able to get it all out and the vomit goes back down into her

lungs. She has these times when she is gagging so hard to the "stuff" that she will turn blue and really struggle to get it up. Kyara is definitely sick. Yuck! Yikes!

Kassey has also been sick. Hers seems to come and go, though. She is the typical child; when she feels sick, you can tell. I thought she was over it, then yesterday, before church she threw up at Waffle House. All over her velvet dress. Well, that was the last of the puking for her, at least.

Then last night Skylar said she didn't want to eat dinner. What?! By the end of the night, she was throwing up, too. We ended up blowing up the air mattress and putting it in the living room for her to sleep on. (She has a loft bed, and I didn't think she would make it out of bed in time, or safely!) So I "slept" in the living room with her last night. This morning she is finally feeling better. The vomiting stopped around 3:00 in the morning.

I am spending the day today washing EVERYTHING that can go the in washing machine and Lysoling everything else!

Happy 2nd Birthday, Kassey!!

2010-01-28T09:00:00.002-05:00

Yesterday was Kassey's 2nd birthday. We celebrated by going to the dentist (Ms. Mandy was great!), playing at Bunny and Pop's house, eating dinner at church, and cupcakes and a few presents at home. Saturday we will have a birthday party with our whole family and I will be sure to post some pictures then.

Pictures!!

2010-01-18T22:00:00.008-05:00

I know it has been a while since I have posted some pictures, so here are some:

Santa came to visit Kyara's class before Christmas. He was sweet! Kyara is checking him out!

Kyara's Yellow Princess Chair. Thank you, SANTA!!

Skylar and Kassey loving on Kyara.

Last day at Corral. Kyara had a good time. Thank you!

Not loving the Chirstmas lights.

Skylar and Kassey help us rake the leaves. We had to take time-out to play in the pile!

Kyara in her Jenn-swing. This swing has been good for her!

Georgia Blizzard of 2010!!

2010-01-18T21:15:00.005-05:00

Kassey was actually able to go sledding in the 1/4 inch of sleet/snow we got last week! She is sledding with one of Kyara's occupational therapist's sons. We had a play day at their house. Tons of FUN!!
Yes, it was a snow day, school was cancelled, and the stores were sold out of bread and water!

Our backyard is a winter wonderland! Ok, Michigan folk, I know you must be laughing at us, but this was a MAJOR happening. School was still delayed 4 days later!

2010 New Year's Feast! Skylar is playing with her food!

Wait, Kassey! We have to cook them first!

I seem to be getting slower and slower at adding updates. I would like to say I will get better, but I am not sure that I will.

The snow storm week and half ago was a blast. Skylar and Kyara had Friday off from school and school on Monday was delayed 2 hours to make sure the buses could drive safely on the streets. I saw so many cars in ditches, it made me a little nervous to drive. Crazy southern drivers, don't know what they are doing! :) After being in Michigan last winter, this snow seemed like a joke, but I must admit, I slid some on the ice, too!

Things here have been crazy as usual:

Skylar has been doing basketball and karate. She got a pogo stick for Christmas and is trying to beat her record of 150. She has me beat!

Kassey is potty training. We have peeing in the potty under control. Pooping is another issue. She waits till naptime or bedtime when I put a diaper on her and poops then. I guess that will be the next hurdle. She is quite funny, though. She likes to cheer. "Yay! Kassey! Peepee in the potty!" "Yay, Mommy!! Peepee in the potty!" I get the cheers, too! Hooray for us!

Gunars and I are working in/on the house. We had a pipe burst last weekend so we had to get my dad to come help us fix. We also are having to replace our hotwater heater. Gunars has been doing research to decide whether to go with another tank or do the tankless water heater. Finally, we had to replace our roof. We had hail damage from last spring, so we finally got it replaced. After spending months on roof colors and trying to decided on the perfect one, we got one that looks...not good with our house. We are now painting our shutters to try to get it to look decent.

Kyara. I know she is the one you come here to check up on. She is the star of this blog. After talking with doctors, therapist, and each other, Gunars and I decided that Kyara was MISERABLE. She was crying 80-90% of her waking time if she was not sitting in our laps. This was emotionally draining for all of us. It is excruciating to hear your daughter scream/yell/cry like she was and feel completely helpless. After discussing her irritability with her doctors, we decided to use medication to help relieve her discomfort. She is now getting a comfort medication (Chloral Hydrate) 4 times a day which has been a huge relief to irritability. This has truly been life-altering for us. I went out shopping with her today and she did not scream the whole time. I am able to fix dinner, play with Kassey and Skylar, take Kassey to the potty, etc without having to hear her scream and feel totally guilty for having left her. Although the medication has a sedative effect at the beginning, I think she is much calmer and able to take in her environment a little better than before. We are pleased with the results of using the medications.

Happy New Year!

2009-12-31T17:18:00.003-05:00

These are pictures from last year's New Year's Eve ritual. We eat lobster. The one night of the year that we SPOIL ourselves. Kyara enjoyed drinking the "lobster juice" and pretending to be a lobster. I find looking back at these pictures to be a double edge sword. I love seeing her so healthy, active, and HAPPY. It also tears at my heart; I miss her smile, laughter, talking, playing, etc so much!

This year we are going to do the lobster feast again. Our dinner has arrived and although I can't be in the room when we cook them (it is too hard for me, I hate the idea of killing the lobsters myself), I can't wait to EAT! YUMMY!

I pray for a great 2010 for everyone. We will wait to see what 2010 has in store for us. I know it will be a busy year. Kassey is potty training, Kyara has school and therapy, and Skylar has school, karate, soccer, and basketball. Enough stuff to fill our days!

Happy New Year!

Merry Christmas

2009-12-23T23:57:00.002-05:00

It has been a while since I have posted. I get the desire to write something up, then get busy with life...or I am too exhausted to write, or I find some other excuse to not get on the computer. We are now only 1 month from it being one year since Kyara's cardiac arrest, and I can't help but to think about last Christmas. We got home from Michigan (from Kyara's initial surgery) just in time to enjoy a great Christmas at home. We were relieved that Kyara's leak had finally healed and hopeful for a wonderful future for her. We looked forward to 2009 as being a great year...

Now, things have changed.

I feel very blessed to have wonderful people in our lives. Kyara has fantastic therapists, and teachers. We have the best family and friends one could ask for. The support through the year has been amazing! Skylar and Kassey are a joy to be around, and Gunars and I love and support each other through all that is happening around us. God has provided us with the support we need at the exact right time that we needed it. I know He will remain loving and faithful to us, as we will toward Him.

I don't want this post to turn into a tearjerker - at least for me, while I am writing it- so am going to stick with the facts.

Kyara had a neurology appointment on Monday of this week (we weren't scheduled until January, but they had a cancellation). We have been noticing Kyara doing something that could be a seizure, so we wanted to have a neurologist involved in Kyara's care. I have actually had 4 therapist as well as Kyara's teachers ask me if she had seizures because of the look she displays. Anyway, the neurologist confirmed that "yes" she is having seizures. We have decided against treating them because they are not harmful to her. The type of seizure she has is not the type most people think about, where the person is flopping on the ground like a fish out of water. (I know that is not the most sensitive way to describe it, but it gives you a visual). In Kyara's case, her eyes roll up and to the left, she gets very still, she stops crying, and she stares. After 30-60 seconds, she kinda comes out of it, and is calm for a couple of minutes before really recovering. Since Kyara is not mobile, the doctor said this type of seizure does not put her in danger and is not painful to her. It is not causing anymore brain damage, even though she does this 4-5 times a day. So in her case, there is really no reason to add another medication to her list and risk the possible side effects of the anti-seizure drug.

Other than that, we are getting ready to celebrate Christmas with loved ones. We pray everyone has safe travels over the holiday season, a Merry Christmas, and a Happy New Year! (Sorry, I am not sending out Christmas cards this year, I just have not gotten around to it!)

Thanksgiving is done, now back to School!

2009-11-30T21:35:00.002-05:00

It was a good week having the girls home for Thanksgiving holiday. We saw my Grandparents in Eastman, Ga, as well as my Nannie in Columbus, Ga. We were busy with therapy, playdates, and eating LOTS of yummy fried turkey! My brother, Allen can sure fry a turkey! We went to a Christmas tree farm and cut down a tree, however, the decorating is taking some time. For some reason, I can't seem to get my act together to decorate the tree. Well, it will happen sooner or later. Skylar won't let me off the hook on that one. She is already harrassing me about the ornaments... I haven't even gotten the lights on yet!! :)

I took Kyara to a dermatologist a week ago to get her neck looked at. The doctor prescribed an antifugal cream with a steriod in it. This has really made a huge difference in her neck. It looks great when she is calm. When she gets mad, it flares up like a tomato. I am not sure what to think about that yet, maybe it is like how some people's faces turn red when they are made. The redness has been going away after she calms back down, so I hope it is nothing to worry about.

Kyara and Skylar went back to school this morning. Skylar couldn't wait. She is joining the REACH program at school, and today was the first day. I loved the excitement in her voice when she told me about her day today. Usually I get the, "I don't know," answer to all of my questions, but today she couldn't wait to tell me about what she learned. I LOVE IT!

We are working on "unplugging" Kassey from the pacifier. (My mom, Bunny, always calls the pacifier a plug, I guess the name sorta fits). This has caused some long sleepless nights at our house. Thank goodness Skylar is a heavy sleeper, because she shares a room with Kassey and Miss Kassey has NOT been happy about being unplugged.

So, back to Kyara. She is stable. I wish I could say that her crying has stopped, but I cannot. She still cries whenever she is not sitting with one of us. Skylar has been such a big help; she will sit with Kyara while I make dinner or while I am changing Kassey (who, by the way, THINKS she wants to be potty-trained, but refuses to actually GO on the potty. She just likes to sit and read books on it...all day long).

We don't have any doctor visits planned until after Christmas, so we will just keep putting one foot in front of the other, and be thankful for each day that we have together.

Happy Baptism Day!!

2009-11-15T20:28:00.005-05:00

Kassey had fun with some paint in the kitchen!!!

Kyara riding backwards on the horse at Corrall.

Thanksgiving Feast at Skylar's school. Kassey LOVED the food! Thanks Willis Road for a yummy lunch! You did a great job!

On our walk during this beautiful Sunday afternoon!

Skylar is growing up so quickly! Can you see, NO FRONT TEETH!! How is the girl suppose to eat?!?

After church. Everyone was smiling in another shot, but I cut off the tops of our heads. You can only see from our noses down. I figured that would not do...so, at least our whole heads are in this one!

***One of these days I am going to figure out how to arrange the pictures in with the text so that the pictures illustrate what I am writing about, instead of being a the beginning of the post! ***

What a wonderful day we had today. It started out meeting my family at Waffle House for breakfast before church. Gunars' mom, Luz Estela joined me and Gunars, all the girls, and the whole Leonard clan. To count heads, that was...17 in all. We literally TOOK OVER one side of the Waffle House! Then off to church we went. It was a special day indeed, because not only did Skylar, Kyara, and Kassey get baptized, but so did I. It was very special to have my family there today. The baptism was held in the same chapel that Gunars and I got married, so even the location was special to me. The girls did great, Kassey even said "Bye!" and blew the congregation a kiss when we were done. What a sweetheart!

The weather outside was gorgeous was after a yummy lunch at Gunars' dad's house, we went to Peachtree City (PTC) for a walk on the golfcart paths. (For those unfamiliar with PTC, there are hundreds of miles of golfcart paths all over the city. Many of the residents own golfcarts and use them to get around town instead of cars.) The leaves are changing and walking through the woods on the paths was fantastic. I really enjoy the peacefulness that comes from the walks. After the walk, we headed out for icecream, even though by this time it was about time for dinner. Nothing like dessert first!! It is the most important part of the meal as far as I am concerned.

We then headed for home, where after dinner, Gunars and Skylar competed on the Wii, Kyara enjoyed being in the middle of the them, and Kassey watch to get pointers for when it is her turn to play. A little reading before bedtime, and then lots of hugs and kisses for the girls.

Why did I just write step by step how our day went? Really I could have just summed it up in a short sentence.... This was the most perfect day I have had since January 21, 2009. I could not have asked for a better day. Kyara was mostly calm today, which help the mood, again I really think she likes moving, so the walk was perfect for her! God is great!!

So how about the rest of the last two weeks?

We have been BUSY!! Kyara is doing better at school. At least, I think she is. I am not getting as many notes home saying she cried all day! :) She has also started to do some horseback riding with the school. A group of volunteers meet at a barn in the county called Corrall. They cater to children with disabilities and to my understanding the special education classes in the county have the opportunity to go to Corrall for a six week session. Because of Kyara's weight and inability to sit up, she has to ride on her stomach. She faces the horse's tail with her legs on either side of the horses back. The movement of the horse walking seems to really soothe her, so that has been great! The school bus has the same effect. I guess the vibration of the bus gives her enough feedback or stimulation to keep her happy. That's good because she is on it for quite a while in the mornings!

Skylar had a Thanksgiving lunch with parents on Thursday, so Kassey, Gunars, Bunny and I went. I like to see Skylar doing so well in school. Kassey loved getting to eat with Skylar. She felt like a big girl. She kept telling me the rest of the day, "Sissy, school." Yes, Kassey, Skylar is at school!

Skylar also has finished soccer for the season and just in time for basketball! So far, she is really liking the new sport!

Kassey in experimenting with paints. Thank goodness for washable paint!!!

Next week we will be going back up to the see the rehab doctors so Kyara can get Botox shots in her finger flexors (the ones that bend your fingers, by getting the shots we are hoping she will be able to relax her fingers better and open her hand more), bicep, and pectoralis (chest) muscles. I hope the shots will allow Kyara more range of motion.

Please keep Kyara in your thoughts and prayers.

Halloween

2009-11-03T13:02:00.005-05:00

Halloween was cold and wet this year. Gunars and I dressed up along with the girls. In case you can't figure out what we are by the pictures, I'll explain. Gunars is a ninja, I am a vampire. Skylar is a skeleton bride, Kyara is Mary from Mary Had a Little Lamb, and Kassey is a bat girl. Kassey's outfit was suppose to be a 24 month size, but when we put it on her on Halloween night we realized I had bought a 12 month out fit. Needless to say, it doesn't fit. Oops! Gunars and Kyara stayed home and passed out candy to all the trick-or-treaters and Skylar, Kassey and I made our way through the neighborhood trick-or-treating. It was good fun.

Sunday was a hard day. It was All Saints' Day. In church we celebrated the lives of those whose passed away during the past year. I didn't realize how hard it was going to be on me. How close we were to having Kyara on that list. In some ways, for me, she kinda is on that list. The Kyara I have know and loved for the first 4 1/2 years of her life is gone. I mourn not having her with me everyday. Although her body is still here, she is not. She is not singing to me anymore. She is not laughing and playing anymore. She is not reading books to me, telling me about chlorophyll, or even really smiling and looking at me anymore. And as much as I want her back for me, I want her back for her, too. I want Kyara to have everything life has to offer!

November 1st is also the day we arrived in Michigan. November 3rd, today, was the day of her surgery. One year ago. At the time, I know we made the best decision we could for Kyara. We really believed that this surgery would provide her a better life. Boy were we wrong. I wish we could go back and not do the surgery at all. Put life back the way it was. But... we can't. All we can do is move on with our lives, provide the best home we can for the girls.... full of love and support for each other.

On a different note, Skylar has been complaining about her leg hurting for a couple of weeks now, so I took her to the doctor yesterday to get it looked at. They did x-rays and everything looks fine, Thank God! She has been instructed to restrict activity for the next week. So, no karate, soccer, basketball, or PE for her for a week and then we will see how she feels.

I know this has not been a very uplifting blog. As we move away from this date, I pray God will give me the strength to find joy in each day, through Gunars, Skylar, Kassey and of course, through Kyara.

First Days of School

2009-10-28T21:08:00.003-04:00

Kassey loves to put on Skylar's shoes. This morning she found Skylar's soccer bag and decided to give it a go! I promise, I had nothing to do with it. She put the shinguards and cleats on by herself. She reminds me so much of Skylar and Kyara at this same age! I think Kassey looks alot like Skylar but has Kyara's personality!

Kyara getting a lift onto the school bus.

We were waiting for the bus in the pitch dark. That yellow rectangle close to the back of the mailbox is the school bus top coming toward us. By the way...Check out Kyara's new chair!! Hers is finally in. She is styling in the hot pink!!

Skylar and Kyara before Kyara's first day of school. I had to put Kyara's sweater on backwards because I forgot to put it on her before buckling her in the chair. It is way too much work to get the buckles all undone when we were running short on time. I know... Slacker Mom!

Kyara has finally begun school. She went on Monday morning. Rode the bus and everything! I can't believe the bus comes so early. It was a mad rush to get her awake, dressed, medicines in, buckled in the chair and out the door by 7:10. I admit had a couple of tears when they pulled her up on the bus and said "Ok, Mom, we will see you later." Wait a minute! It was relief and anguish at the same time.

Her first day went well. I went in at 11:30 to get her for therapy and Ms. Malcolm and Ms. Kim, Kyara's teachers, said she did great! Yeah! So we headed off to therapy feeling good about school. On Tuesday, Kyara had therapy first, then Kassey and I took her to school. We were suppose to be there by 11:30, but we were late. GREAT :( Our second day at school and we are already late. Not a good way to start. Oh well. What can you do? So we dropped Kyara off and headed to the mechanic. (Oh, did I fail to mention that my steering wheel was not working right when we left therapy? Right, right, right. It only took 3 tries to get out of the parking space and 2-3 tries to get out of the parking lot. Then suddenly, the steering wheel worked again. I was having to put all of my strength and body weight into trying to turn the steering wheel. Scary!)

My mom was nice enough to come rescue us from the mechanic and take us home. Back to Kyara... She finally got home and I got a note from her teacher out of her bookbag. It read..."The honeymoon is over." OH NO! Hahaha! Kyara didn't have such a good day. I couldn't help but laugh a little. I wish it had been a better day, but I know she needs time to adjust. She cried some last year, before her accident, too. I think Kyara has some separation anxiety and this is not new. We will see how she does in the coming weeks.

Today Kyara didn't go to school. Yes, she is scheduled to go, but we had doctor appointments at Scottish Rite (the Atlanta hospital that she was in from April to June) and couldn't reschedule them for a close date. The doctor appointments went well. Just check ups. One thing we discussed was doing more botox on her arms. The rehab doctors agreed and November 18th we will go back and have botox on her finger flexors, her left bicep and her pecs (chest muscles, they are pulling her shoulders forward). I hope this will give her some relief and better range of motion.

So to recap, Kyara has been enrolled in school since last Monday. In those 8 days, she has only gone 2, and we were tardy one of those. I don't think I am winning any Mommy of the Year awards!! :) After the pneumonia wiped out last week, we are still trying to get on track. We will get it sorted out, and Kyara will be the model of good attendance!

School Delay

2009-10-19T20:23:00.002-04:00

So the IEP is done. I think it went pretty well. Kyara is scheduled to go to school Monday and Friday mornings, Tuesday and Thursday afternoons, and all day Wednesday. Wednesday is therapy day at school, so I am glad she will be there all day. On the other days, she will receive private therapy during the times she is not in school. We will still be busy running from place to place, but whatever is best for her, I am all for. I would drive to the moon everyday if that would help her improve. One thing that I am not as pleased about with the IEP is that Kyara is not scheduled to go into a regular education kindergarten classroom. I feel this is very important for Kyara. I am still running on the belief that Kyara is in there and not able to let us know that she understands everything happening around her. Believing this means that she SHOULD be around her regular peers to get that interaction. I also believe Kyara will improve. I don't want her to be an "outsider" when she is able to enter a regular classroom down the road. I believe that if she is a part of the classroom now, while the kids are still in kindergarten, then it will be more likely for her to be accepted as a regular student in the future. I understand the school's argument of "give her time to adjust to going to school again," and "we want her to be an active participant, not just a passive observer." But, I disagree. I can only think of what is best for Kyara, and I think that by first being a "passive observer" she is more likely to become an "active participant." I know Kyara and I know she needs a challenge, she needs pushing, and she NEEDS to be with her "normal" peers as much as possible. I want her to see that there is more than just the profound class at Poplar Road. We are not giving up on her and Kyara needs to see that. Whew, I'll get off my soapbox now.

Kyara was scheduled to start school tomorrow, Tuesday, but that is going to be delayed. The problems started last Thursday. Kyara started coughing some and spitting up little chunks of thick white/yellow/greenish mucus. No fever, no other symptoms. So, I took her to the doctor on Friday just to make sure nothing was going on. Turns out she has an ear infection. We left with a prescription for Amoxicillin and the thought that it would be getting better. Unfortunately, over the weekend, Kyara got worse and worse. Yesterday, Sunday, Gunars had to wake her up at 11:00 and she was very lethargic the rest of the day. Last night she started running a fever. This morning it was up to 103.5. Ok, doctors, here we come. Today they got chest x-rays and found pneumonia. So, long story not so short, Kyara will not be going to school tomorrow. We have a new antibiotic and I hope it will help her feel better soon. On the upside, Kyara has not cried much at all the last two days. On the downside, Kyara has been too sick to cry the past two days.

We have also found a new speech therapist in Peachtree City and so far, so good. I like what she is doing with Kyara. She seems to really care about her and working on her communication skills.

Suit Therapy is Over...Now for School

2009-10-11T21:37:00.003-04:00

Head up!

Head up in the Gait Trainer!

Sitting by herself!!

First Day of therapy. Kyara is riding Snowflake. She seemed very happy when riding the pony!

First Day, Sharon is supporting Kyara in the cage. The last week, Kyara was able to stand here by herself!

We ended the suit therapy last Monday. I think it was well worth our time. Since we have been seeing Kyara's regular therapist this week, I have had them all mention how "different" she feels. Her arms are looser, she is holding her trunk better, she holds her head up more often and for longer periods of time. She is smiling, at least a little smile, each day. Kyara is able to do partial weight bearing with her left leg (she has lots of support, hints the word partial, but she is able to do it!). I am very pleased with the results. Of course, I wish she had jumped up and ran out of there, but I tried to go into the process with realistic expectations. Sharon, the therapist at Kids In Motion, was awesome. She and April, her rehab aid, worked hard with Kyara for the three weeks. I am ready to get Kyara back in the therapy for another session. Hopefully we can get get insurance to approve another round since she had good progress with the first round of suit therapy.

So now that suit therapy is over, I am back to procrastinating about school. What is best? How can I get ALL of the therapies in, schooling in, and be there for Skylar and Kassey? Sometimes I think there are not enough hours in the day, then other days I wish the day was over so I can go to bed! Well, tomorrow is Kyara's IEP so I guess it is time to make decisions. This is what I am thinking... I want Kyara to go to school 1/2 days. I want her to go mornings on Monday, Wednesday, and Friday. And I want her to go afternoons on Tuesday and Thursday. This will give her the chance to do physical and occupational therapies on M, W, and F, and speech on Tues and Thursday. . I want Kyara to have an one-on-one aid while she is at school and I want her going to regular kindergarten classrooms for calendar and circle time. I don't think I am asking for too much, only what is best for my child.

Speaking about speech, I think we may have found a new speech therapist who specializes in communication. Kyara and I are meeting her on Tuesday morning, so we will see what she has to offer and see how Kyara responds to her. I have high hopes. Of course, I always have high hopes!! I was given her name by a company that specializes on augmentative communication, Dynamics. Unfortunately, the company is in North Atlanta and we live in South Atlanta. It is a GOOD hour drive to get to Dynamics. They suggested I get in touch with the speech therapist in Peachtree City. That is a more reasonable 15 minute drive from my house and Kyara's school. The thing about Dynamics is that they evaluate special needs kids for communication devices. One in particular is very interesting to us. It is called a dynavox. I am not sure whether Kyara's is ready for it, but it sounds really neat. It is a computer that would give her the ability to communicate with us. The people at Dynamics will do an evaluation (the evaluation process could take up to 5 weeks to finish, they are very thorough!) to see if Kyara is ready for one. Since insurance only pays for this once, we have to make sure timing is right! The Dynavox is close to $16,000!! If Kyara is ready for one, then the speech therapist in Peachtree City will teach her and us how to use the device. I still want to push Kyara toward speaking again. That is our ultimate goal, but she needs to be able to communicate her needs and wants to us now!

So, in a nutshell, that is what has been happening around here lately. I pray this week goes well. I am nervous about the IEP tomorrow. I have heard horror stories about them! I wrote out my desires for Kyara on this entry so that I can see how I come out tomorrow. For some reason I feel very defensive/aggressive, as if I am going to have to fight for what I feel is in Kyara's best interest. God, please allow the right path to be figured out tomorrow.

2 Weeks In...

2009-09-28T20:44:00.002-04:00

Where to start... sometimes I am not sure. I suppose the easiest thing is to start where the last entry leaves off. That makes sense...right? But sometimes, one is too excited or their heart is too full to begin so far back. So... I am going to start with the exciting news first.

KYARA SMILED A REAL SMILE ON SATURDAY!!!! Thank you, God!! This smile filled my heart like I can't explain. It was a real smile, not one that I was questioning "was is or wasn't it." It was a true smile. If only I could have gotten a picture of it! Here is the cruel part of not capturing the smile with a picture... she has not smiled like that since. Although I felt like I would never be able to forget what it looked like, as if the smile was etched on the back of my eyeballs, it is slowly fading away. I know I saw teeth, but did I see dimples? I am not sure. I can't see it in my mind as clearly anymore. But, I know it was a beautiful smile and if she can do it once, she will be able to do it again. I will wait for that next smile and ALWAYS have my camera ready! It is amazing, just when I start to feel like things are not progressing, God provides something to say "Keep positive, keep faithful, and keep loving."

Since Kyara has started the suit therapy, she has begun to move her right arm more and tonight she moved her right leg to bend her knee while lying in Gunars' lap. She seems to have a bit more control in her trunk and is holding her head up more often. I see improvements everyday, so I am thankful that we decided to go forward with the suit therapy.

Gunars and I took a nice trip down to Gainesville, Florida for alumni weekend for Gator Soccer. We got to see the Gators play a couple of soccer games and see the Florida vs. Tennessee game. It is great to be a Gator! We stayed with Gunars' old roommates from college and had a great time talking about "the old days!" It was also great to catch up with my old teammates. They are so awesome... the alumni had a tailgate fundraiser to help Kyara's medical costs and we GREATLY appreciate the donations. I am hoping to get her a special tricycle with the money for Christmas. I am told that it takes about 3 months to have one built, so I need to get on that!!

Skylar has lost her first top front tooth. She yanked it out by herself yesterday, and the silly toothfairy got caught up in traffic last night and didn't make it here before she got up. Hopefully the toothfairy will get on the ball tonight!

Kassey is as crazy-fun and stubborn as they get. She looks up to Skylar and wants so much to be like her big sister. Lately I have been catching her in Skylar's bed. This wouldn't be such a big deal, except Skylar's bed is 6 feet off the ground (she has a loft bed)! She gives lots of kisses to Kyara and takes good care of her... rubbing her legs with lotion, showing her boo-boos, and letting me know when Kyara is crying. She loves both of her sisters very much.

We have many things to be thankful for. I am going to continue to pray for more success with the suit therapy and for help knowing what to do about schooling for Kyara. Thank you for your prayers, comments, and best wishes.

Suit Therapy Begins!!

2009-09-15T21:32:00.002-04:00

Kyara started suit therapy yesterday. She is also doing some hippotherapy (riding on a horse) at the same time. Our computer is sick (crazy viruses... how is it possible for a nonliving thing to get a virus???) so I am working on Gunars' laptop. I hate writing on it, so I am going to keep this short. Thank you all for keeping up with Kyara. She means the world to us, and although I am not posting as much, we are still in need of God's grace to help Kyara recover. I pray this suit therapy is going to get us on a path towards recovering some of her strength and function.

The Stander is IN!!

2009-09-03T21:35:00.002-04:00

Kyara got her stander today and even though it is not perfect, she was very content in it for about 30-45 minutes tonight! That is a LONG time for her to be content in any position! YEAH!!!

I also got her stroller today. I ordered it last week after lots of researching and calling size therapists to make sure it would be a good fit for her. Well, I was totally excited about getting it. I spent 45 minutes putting the thing together (with Kassey's "help") and Kyara is too big for it. I am crushed. I really liked the stroller, but I don't think its a good idea to keep it if she will only be able to fit in it for 6 months. What a waste. I guess I will be sending it back. Gotta find out shipping costs. Yuck!

Kyara is also borrowing a Pace Gait Trainer from her therapist. I will post a picture of it soon. WE are trying to encourage her to move her legs to walk, but it will take time.

Thank you for the suggestions on the dry skin. I am going to try them and see what will work. Our doctor also suggested anti-fungal soap. I don't know what that is, but I guess I will find out.

Have a wonderful Labor Day Weekend!

Ready, Set,...Wait

2009-09-01T13:32:00.002-04:00

We were mentally all set to start suit therapy next week, but unfortunately, we are going to have to postpone one week. We will start on Sept. 14 instead of Sept. 7. Really, this is not that big of a deal. It gives insurance a little more time to get their act together and approve at least part of the therapy.

Kyara is still pushing along. Thank you, Mrs. Higley, for the advice about the Caldesenne (sp?) Medicated Powder. It has worked wonders for Kyara's nasty yeast rash in the folds of her neck. Although they are not gone yet, they look a hundred times better than they did! Now I have to figure out what to do with the dry, red, patchy, flakey scalp. Any ideas there are greatly apprecited. I have tried T-Gel Shampoo and baby oil then combing it out. So far, these have not worked. IF you have suggestions, I am open to them!

We went to Villa Rica this morning for a pt evaluation for Kyara. It went well. The therapist are very nice. I am really looking forward to getting started with this suit therapy and see what comes of it. I pray for good results!

Life is hectic!

2009-08-27T11:24:00.003-04:00

It has been a while since I have had the chance to sit down and write. I don't really have the time now, either, but I figure a short update would be good.

We are scheduled to do suit therapy with Kyara starting Sept. 7. Yes, that is Labor Day and I think this therapy will be labor intensive for her! I hope she gets alot out of the therapy.

Kyara has a yeast infection in her neck folds that we have been battling for the last 3 weeks. Because she keeps her head down and to the left alot, the stupid infection won't dry up! We have had her on a couple of different creams, but so far, it is still there.

She is working on rolling and got in a gait trainer yesterday at therapy. That was exciting! I loved seeing her upright with feet on the floor.

The school system is sending a PT and an OT to the house to see Kyara once a week. She is still seeing her private therapists 2-3 times a week. So when it is all said and done, she is getting therapy everyday of the week. One thing I am not happy with is her speech. Her speech therapist is a feeding specialist, but that is not what I feel is most important for Kyara. I am looking for someone who is an alternative communication specialist. Someone who can assist Kyara with "voicing" her needs and wants, likes and dislikes.

Skylar has started school and is LOVING it! She starts soccer next week and guess who is coaching? This will be my first coaching experience, so it should be interesting. Skylar is still doing Karate, so our weeks will be busy.

Kassey is a busy bumblebee. She likes books and her vocabulary is getting bigger and bigger each day.

We are a very blessed family. I miss Kyara so much, but we are looking for the positives in every situation.

Kyara's Birthday Party

2009-08-09T21:57:00.002-04:00

So, the actual birthday..day was a bust. It is both Kyara and my birthday, and it was difficult to want to celebrate anything. I cried alot that day. I didn't realize it was going to be so hard. I kept having memories of her last birthday flash through my head. It was hard to NOT go down memory lane. It was the first day of school, Kyara was in PRe-K. I brought icecream to her class since Kyara could not eat cake. I have a picture of her birthday dinner still up on the refrigerator in the kitchen. She is smiling wide. She was happy. She was 4 and did not have a care in the world... ok. Enough of that now...

Yesterday, Saturday, we had a birthday party at the house. We invited our family to join us for a talent show party and each guest was told to bring a talent for the party. This was Skylar's idea. Although we were more than a bit skeptical about how the party would go, I must say it was FUN! We had the kids play outside for a couple of hours, ate pizza and watermelon, and the adults played some game Matt (my little brother) brought. Once the kids were officially drenched in sweat and it seemed like it was getting a little late, we threw all the kiddos in the tub for a "hose down." We then gathered in the family room and drew names out of a hat to perform talents for the show. We had everything from golfing, dancing, and hula-hooping to belly whistling and ear squeaking. There are more talents than I dare list. It was great fun! I am so glad that we had so many participants. I videotaped it, so I can ensure everyone will be nice to me... or else!!! Hehe! Thank God for family. They stand by you when you are down, and back you up when you are ready to get up again.

Kyara is still plugging along. She has been holding her head up for longer periods of time (20-30 seconds, sometimes) and more often during the day. She is working on head control in therapy and I hope it continues to improve. I am not sure why, but she has stopped going on the potty like she was doing. I don't know what has changed, but she used to "go" everytime I put her on it. Now, she is not using it at all. This is frustrating, I hope we can get it going again.

I am still deciding about the school business. I am keeping my options open for now. We are written up as "homebound" until after she does the suit therapy. We have decided to go ahead with the suit therapy. I am working on getting all of the paperwork, xrays, etc. finalized and we hope to start a week from tomorrow (8/17). It will be a 3 week course in Villa Rica, Ga. The therapy place is a little over an hour from our house, so we will stay at home and travel there everyday.

I will post pictures as soon as I get some. I was too busy playing at the party to take pictures. Hopefully my dad (Pop) will have some good ones!

Happy 5th Birthday, Kyara!

2009-08-06T21:41:00.002-04:00

I wanted to write a great note about a wonderful birthday, but that is not how the day went. Skylar was great today, while I have been a basketcase. I didn't realize today would be so hard. We have had a hard day and I don't have the heart to write on here tonight. I miss Kyara.

School Decisions Bite the Big One

2009-08-02T21:27:00.002-04:00

I don't know what to do about Kyara's schooling. I thought I knew, but now I am completely confused. I had a meeting this past week with the Coweta County School people to discuss eligibility and placement. It was a bit of a reality check. I sat there for 2 hours while they listed all of Kyara's past and present medical problems. Her limitations and weakness were written in black and white right there in front of me. I don't know why this came as a shock to me. For the last 6 months, I have been with her, talking to doctors, discussing her situation with therapist, etc, but during this meeting, it all became real. I really have to choose where to place my child. The best place for Kyara may REALLY be in a profound classroom (a special education classroom for profoundly disabled children). This would mean Kyara would not be going back to her old school. Maybe I am selfish, but I WANT Kyara back at Willis Road, where I know people and where the teachers, staff, and students know her. But if that is not the right place for her, if she is not going to get the education she needs there, then I need to be open to the other school. As one of the Coweta County people said to me (which really hit me hard): This is not the same Kyara that they knew at Willis Road. Well, no, she is not the same. But she is still Kyara. And I don't know that she not the same on the inside. My fear is that she will be placed in this profound classroom and be pushed aside to stare out the window all day. I am told this will not happen, but it worries me. I also wonder... Are they afraid of Kyara? When she said, "This is not the same Kyara..." she said she was concerned about the other students reaction to Kyara. I have found that it is the ADULTS, not the kids (especially the younger kids) that have a hard time accepting Kyara. Kids want to ask questions, they want to know why Kyara is like this now. Many adults seem to stare or immediately shift their gaze away like they may catch whatever it is Kyara has. I, for one, am more appreciative when someone asks us what's wrong and they speak to Kyara, rather than run away like we have the plague.

Ok, so I am not sure what all that was about, but... moving on...

We are still looking into the suit therapy for Kyara. I think we are going to go for it. It is pricey, but NOW is the time to push all the therapy we can. Kyara will go for 3 weeks and it is 4 hours a day and 5 days a week. The place that does the therapy (Kidz in Motion) is in Villa Rica, so I will be travelling there and home everyday. We are going to delay her starting school until she has completed the therapy. In the mean time, I have agreed to do a homebound IEP (Individualized Education Plan) for Kyara so that she will not be considered absent while in therapy.

Kyara's birthday is just a couple of days away, and I pray that we will make it through the day with laughter and not a lot of tears. She will be 5, and I am amazed by how fast it has gone by. She has endured so much in her 5 years here on earth, it doesn't seem right. It is about time for something to go right for her. Maybe this suit therapy will help jump start her recovery. I am praying to know the right decision for Kyara.

6 months

2009-07-21T21:56:00.003-04:00

It has been the longest 6 months of my life. There has been some good progress made, but Kyara is NOT at the level I wish she was at. Today was a good day at therapy. Skylar was with us and she used a Mr. Potato Head to play a game with Kyara. She put some of the body parts in the proper place and some of the body parts in crazy places. Then we used 2 switches (a "yes" switch and a "no" switch) for Kyara to tell us if each body part was in the right spot. For example, Skylar put a tongue where the eyes should be. So we asked Kyara, "Is the tongue in the right spot?" She would then have to press the "no" button to answer us. Kyara did great! She got ALL of the right! I guess that answers the question as to whether she can see or not! At least during this exercise, her vision was good enough to tell what that crazy Mr. Potato Head looked like. Kyara also nodded an appropriate yes to a teacher at the new school we are looking at sending her to next year. This is a new thing. I think she is getting stronger and better head control and maybe nodding will be easier as she can control her head better. I hope so. That would be great.

Kyara is still vocalizing ALOT. At first I was really happy to hear her make noise, and now... not so much. Sometimes I would love some peace and quiet. The vocalizing...communication...screaming...crying...whatever you want to call it, is a little frustrating to deal with day in and day out. I can't imagine what she must be going through inside her head. It must be terrifying and frustrating to have lost her independence. She was always a very independent child. But, being the mother that is trying her best, and unable to figure out how to help, is heartbreaking as well. I have been taught a lesson from Skylar, though. She takes all the screaming and crying in stride. I don't know how she handles it so well. So I asked her, "Does Kyara's crying bother you? It's ok if it does, because it bothers me alot, too." Skylar looked right at me and said "Yes, but that is the only way she knows to talk." Wow. At times I think I lose perspective. Kyara is not crying to get on my nerves. She is not trying to drive me crazy or to tears. She is just trying to communicate with me. I need to take a deep breath and not let it get under my skin.

It has been 6 months since Kyara's anoxic brain injury. 6 months since I heard my daughter's voice, 6 months since I have seen her smile. It has been 6 months since our world got rocked. I miss Kyara more than words can say.

This is a picture of Kyara in the pre-op room 5 minutes before I took her to the surgery room for her to have the dilatation done. This is the last picture of Kyara before the anoxic brain injury. The last picture I have of her smiling...I pray I will have more smiles in the future.

Therapy Pictures!

2009-07-15T22:40:00.003-04:00

... Michelle stretching Kyara's fingers.

Kyara riding on a "Lazy Susan"!

I was excited to see Kyara hold herself up and not fall to either side!

Kassey and Skylar came to therapy today, too. They wanted to join the fun. Kassey didn't hold herself up as well!!

The Education Debate

2009-07-15T22:03:00.003-04:00

We are getting closer to a new school year and I am trying to decide the best place for Kyara. There is a school close to us (the Joseph Sams School) for children with disabilities, and we are also looking at good old public school with our county school system. We have been thrilled with Skylar and Kyara's schooling at Willis Road Elementary, but after having an evaluation done for Kyara yesterday, it doesn't sound like Kyara will be able to attend that school anymore. The evaluator was suggesting a self-contained classroom at a different school across the county. I am not so sure I am happy with this idea. First off, I think Kyara is stuck in a body that is not working the way she wants it too. I think she needs to be in a regular classroom as much as possible. If she is not going to be in a regular classroom, then I want her in a school that will provide lots of therapy, cognitive development, and specialize in alternative communication. Am I asking for too much? I don't know... If I could have it my way, I would split time, part time in the school that specializes in children with disabilities, and part time in a regular classroom with her peers. She needs to have motivation. She needs to be with friends. She needs to learn. Kyara loved reading and doing math problems. She loved the computer. I want her to have access to these things again.

We are looking into a couple of different therapies for Kyara. One therapy is suit-therapy. Kyara would wear a suit that was designed in Poland and go through physical therapy for 4 hours a day/5 days a week/ for 3 consecutive weeks. The program is offered at a therapy center about an hour from our house. They claim that some kids get 6 months worth of improvement during those 3 weeks. We are also looking into Hyperbaric Chambers, which provide an increased amount of oxygen to the body to help the brain heal. We are also considering hippotherapy (horseback therapy - which is suppose to be great for trunk control) and aquatherapy (therapy in the pool). Unfortunately, none of these therapies are covered by insurance, and for some strange reason, money doesn't grow on trees. So, we are going to have to be selective in which therapies we pursue.

Kyara has been working on tasting foods. We are using a mesh bag to put food in and allow her to chew on it without getting large pieces that she would have a hard time swallowing. We are also spoon feeding her tiny amounts. The thing that is exciting about this is that she is moving her lips and tongue to move the food from her lips into her mouth. This is a great movement to see and shows that she has the capability to learn to eat again! Praise God!! We are also using small dum-dum suckers to encourage lip movements.

Skylar and Kassey have had busy summers. Kassey is learning all kinds of new stuff and loves going down the slide. She has learned to climb ladders, so I have to be on my toes...she like to climb up on Skylar's loft bed! Scary!! Skylar has been going to gymnastic camp, karate, and swimming lessons this past week. Exhausting!!

Gunars is busy with work. I am not sure where to time goes. It seems like there are not enough hours in the day to get everything done. My house is a disaster, my kids don't always get a bath, and I have forgotten how to cook. But, we find time each day to laugh, love, and hug. And, when the day is over, and I am climbing into bed (on sheets that haven't been changed in 3 weeks) I know that my girls and my husband know how much I love them. I can always plan to clean the house....tomorrow.

Summer Time

2009-07-08T13:42:00.002-04:00

We had a great time at the Fireworks on the 4th. That morning, I took Skylar and Kassey to the Peachtree City Parade while Gunars stayed at home with Kyara. Then we spent the day together doing...stuff. That night, we met my brother, Allen and sister-in-law, Missy and their crew at Partner's Pizza for dinner, then out to the fireworks. It was a great night. I think the fireworks got Kyara's attention, at least for a while.

Sunday was my mother in-law's birthday. Happy Birthday, Luz Estela! So we went over to her house for lunch. They have an awesome hammock on their back porch and we put Kyara in it when we first got there. She used to LOVE being in the hammock. Once again, the hammock seemed to be a great fit. She was so quiet and content while she was in it. It was nice to have her peaceful for a long period of time. I think the swining, the breeze and the cocoon-like nature of the hammock made her feel very comfortable. Now we have to figure out where to hang ours! I wish I could figure a way to hang on IN the house. I will have to process on that one for a while.

Life here is getting into a bit of a routine. I don't feel as overwhelmed as I used to. One thing I am not getting over is the emptiness in my heart that Kyara used to fill with her laughter, talking, playing, and goofyness. I see pictures of her that are around our house and it tears me up everytime. I am looking for the good side of this, but it is just so darn hard! I pray that God will heal her. We can only work within His will, though, and I know He is using Kyara to bring a difference to so many people's lives. Maybe I am greedy and selfish, but I don't always appreciate the road God has chosen for us to go down. I would prefer the road that we were heading on 6 months ago. I say that now...but is that really true? I am not sure about that either. Having this happen to Kyara has brought me closer to my faith in God, so maybe the road I was on before was not so great. What I do know for sure is that I miss Kyara terribly and I worry about how this will impact Kassey and Skylar. Gunars and I are doing our best to sort through our own emotions, and I hope I am providing the support the girls need, too. I pray God gives us the strength to see each other through.

Happy 4th of July!

2009-07-03T21:45:00.002-04:00

I may be a little premature, but I don't know if I will have a chance to get to the computer tomorrow or not, so... Happy 4th!

This week has been busy! There have been ups and downs. I guess that is typical of any family life, though.

Monday, the girls and I headed to Columbus, Ga to see my grandmother and to return her van. We used the BIG conversion van to go to the beach, and I don't know what we would have done wtithout it! By the time we got Kyara's wheelchair and all of her other supplies in the van, we were lucky to be able to squeeze everyone in. There is no way we could have done it in my minivan. So, the conversion van was perfect! I was trying to get to Columbus early so that I could spend the day with the girls and Nannie (Bunny was there visiting, too), but I wasn't able to get out of the house until 11:30. Potty, changing diapers, getting medications together, changing clothes 2-3 times over, etc. really slowed us down. I also wanted to get the van cleaned before we took it back. Did you know conversion vans do NOT fit in car washes. After the third place, I finally said "Forget it!" I vacuumed out all of the sand and dirt, wiped down the inside and decided the tan van was in good shape. I enjoyed the 2 hours we finally got to spend with Nannie, just wish it had been longer.

Tuesday Kyara had therapy. Allen and Missy were sweet enough to watch Skylar and Kassey while Kyara and I went to therapy. We then all went to the pool for a while. The girls had a great time. I think Kyara may have drunk have the pool, I seemed to have a hard time keeping her face out of the water. No harm, no foul, right? I also had a negative experience at Wal-Mart. I was there with Skylar, Kyara, and Kassey. Skylar pushed Kyara in the wheelchair and I had the buggie. I was surprised at the mouth open, eyes bulging, stares we got as we did our shopping. Not just from kids, but from adults, too. After a while, it really started to get on my nerves. Mind you, Kyara was fussing some, but still. And that wasn't even the bad part. While I was leaving I met a lady who also has a child in a wheelchair. We talked as we were heading out to our cars and stopped outside the front entrance (out of the way of the doors) to finish our conversation. While we were there (only about 5 mins) the Wal-Mart "greeter" sent 2 customers out to tell us to move because my child (Kyara) is crying. Then she came out and told me I needed to move because she (Kyara) was crying and not comfortable. WHAT?! I told her that I was Kyara's mother and that I know how to take care of her. But thank you very much for your concern. - Kyara cries. She vocalizes ALOT. It can, to an outsider, seem like she is in pain. I understand that, but I think the "greeter" overstep her position. And to be honest, it ticked me off.

Wednesday, Skylar and I went to Six Flags with Uncle Allen and Curtis (my nephew). We had fun. I am pretty sure we went on every ride that Skylar and Curtis were tall enough for except the train that ran around the park. By the end of the night, I was exhausted. I really enjoy spending that extra time with Skylar, though. I think that she gets lost in the shuffle sometimes. She has been so good about helping me at home...When I am elbow deep in poop, she comes running with the garbage bag to put it all in. My mom (Bunny) stayed with Kyara and Kassey and had a few of her friends come over to the house to help with the girls. Thank you so much, Ms. Martin and Ms. Grove!

Thursday was errand day. No fun there! Just running from place to place.

Today (Friday) Gunars had the day off. We went to Kyara's therapy together and Kyara is doing some tasting. We got the go ahead to try some tasting at home, too, to encourage her to chew and begin trying to eat. That is exciting. Otherwise, we cleaned house and enjoyed being with the girls.

Tomorrow is parade, pizza, and fireworks! I am looking forward to a fun day! Have a safe and happy 4th!

Fun in the Sun

2009-06-27T11:22:00.003-04:00

We are having a great time at the beach. So far, it is going great. I am really sad that we will be leaving tomorrow. Kyara has been hanging out in a beach wheelchair that we rented and in a raft while in the ocean. She seems to be calmed by the "motion of the ocean." She also has enjoyed the pool. Skylar and Kassey have been great and love the pool, sand, and sun. Their cousins, aunts, uncles, and of course Bunny and Pop are with us and we are having a great time! I'll post more later...now we are off to the beach!

Recovered Just In Time!

2009-06-20T22:17:00.002-04:00

I am home from the hospital. I ended up staying until Thursday. WIsh I could say I got some good rest, but that is difficult when the nurses come in to take blood every 4 hours! And they couldn't even draw from my IV! I am sure Kyara would have had a good laugh at my expense. I remember how much she hated to have the tape pulled off to take the IVs out. Now I know what she would complain about! That tape HURTS!

So Thursday Kyara had a OT appointment. It went pretty well, she seems to be trying to communicate with the switch again and the OT, Michelle is really good at encouraging Kyara. I like the way she lets Kyara's body tell her what she wants. Friday was full of more appointments. We had orthodics (which are rubbing her arms raw, so he is going to make completely new ones on Tuesday) and speech therapy. I think the speech therapist talks too much. I think Kyara agrees. Michelle, the OT, did a cotreat with the speech therapist on Friday and at one point Kyara was very upset. Michelle asked her if the talking was annoying her, and Kyara hit her button to say "Yes!" Well, that would be a Kyara response, so I tried to hide my smile and giggle when she responded, but I don't know how successful I was.

Today Gunars and I took the girls on a walk. We found a nature trail close to our house and decided to try it out. It was quite a humerous sight... I had Kassey in the stroller and Gunars was pushing Kyara in the wheelchair. The trail started out so nice and wide, it was covered in bark and had logs on the side to edge the path. After awhile the logs on the side disappeared, but the path was still easy to navigate. Suddenly the nice path ended and it was like a "well-worn" path in the woods. There were huge tree roots and boulders in the middle of the narrow path. But we kept going. Poor Kyara's head was flopping around with the bumps, but she did not complain at all, in fact, she seemed to really enjoy the hike. It got so crazy at one point I had to help Gunars lift the wheelchair, with Kyara in it, a couple of boulders that made "steps" in the path. Then I went back for Kassey. What an adventure! We loved it and can't wait to go again. There was a creek that the path followed and an area that you can wade out in it. Skylar liked the hike and Kassey laughed most of the time, so I think it was a hit! We just need an off-road wheelchair, and there will be no stopping us!

So tomorrow we are beginning our next new adventure. THE BEACH. Each year my parents, my brothers and their families, and Gunars, the girls, and I rent a place at the beach for a week. It is something we look forward to all year. In fact, last year, when we were packing to leave the beach, we were already counting the days until we could come back. We are sending Skylar and Kassey on down with my parents and then Gunars and I will follow on Tuesday night with Kyara. She and I have doctor appointments on Monday and Tuesday, so we figure it is best to keep those and go down later. I am nervous as all get-out about the trip, I pray Kyara does ok in the car. I think once we get down there, it will be fine. For me, its the drive. Kyara is not exactly the best traveler right now. The crying can get a bit much, but I hope going later at night will help with this. There is a hospital close to us, so if anything should happen, we know where to go for help. I think this will be a good trip for us all. I pray for safe travels for everyone on the road this summer!

By the way, I wanted to mention....
There was a little girls whose family was at the RMH both times we were there. In fact, they have been there since September of 2008 waiting for a heart transplant. Anyway, Lindsay got her heart last week and although she has had some difficulties, she is on her way to healing. PRAISE GOD! He knows the plan He has for us!

First Week Back

2009-06-14T20:34:00.002-04:00

When Kyara is being moved she is very calm. We go for walks every day in her wheel chair. We stretch her every day. These are things she seems to enjoy and doesn't fuss. We also put her in a swimming pool over the weekend and she was calm and relaxed as well. She has always liked being in the water. Otherwise Kyara is fussing. It's like a soft cry. Skylar and Kassey are taking all of this in stride.

In other news, I'm currently in the hospital with a kidney infection. I thought I had a pulled muscle from lifting Kyara up so much, but when the high fevers kicked in my mom made me go to the Urgent Care. Long story short, I'm in the hospital and will most likely be here until Wednesday.

To end in a positive note, Kyara is controlling her head up better. It doesn't flop all over the place. She still can't hold it up for long periods of time, but she is definitely controlling it better and getting stronger.

Kyara's Home

2009-06-10T22:36:00.002-04:00

Kyara came home on Monday. We are all excited, exhausted, overwhelmed, and thankful to be together. On Monday, my brother, Allen, came up to help me get Kyara out of the room and home. She had a LOT of stuff! Well, I was told she would be discharged between 10-11 am. I told Allen to be there at 11:30, I know how hospitals work. I figured we would get out sometime after 12pm. (Allen guessed, 1:30...he wins! :( ) Well, at 5:30 pm, 2 xrays, and a NG Tube (which is 30 cm from the tip of her nose to the end of the NG tube in her stomach) placement later, we were finally on our way. Could have been worse...

Anyway, I am exhausted and still trying to cope with being home. This has been a very difficult transition for me. Kyara is "crying" "moaning" "fussing" whatever you want to call it, most of the time. I have found that walks in the neighborhood calm her, but what about the other 14 hours of the day that she is awake?? Kyara begins out patient therapy tomorrow, so I am praying that it will go well. I pray that the crying will lessen so that I can keep my sanity. I am so thankful for my mother-in-law and my mom, who have been helping at the house SO much.
My mom, Bunny, is splitting time here and in Columbus with my Nanny (Bunny's mom).

Speaking of which, Papa's funeral was beautiful. I really appreciated the kind words that were spoken about him. My brother, Matt, got up and spoke at the funeral and it was more touching than words can say. He was great...I was extremely proud of him. He touched on the special memories we have of Papa, I think he could have gone on for hours. Papa was an amazing man.

Good News and Bad News

2009-06-03T22:10:00.002-04:00

Which way should I start... Well, I am going to give the bad news and end on a happy note.

My grandfather (Bunny's dad) passed away today. He was an amazing man. He will be greatly missed. I love you, Papa!

The good news... Kyara has had another salivagram and a swallow study in the past two days. She did good on both! Yea! Sitting up really helped! Today she was given a few bites of applesauce in the study. Although she aspirated a tiny amount, she did great with most of it. The speech therapist feels it is safe to begin giving her more tastes (applesauce, yogurt, pudding, etc) to help her relearn to eat!!! YEA!! The only question now is her stomach and how it empties. We will cross that bridge as we get to it, though.

I also met with the communications person today and she was very helpful. We are purchasing a few devices and books to have at home. The books explain ways to properly use the switches and devices to best help Kyara. This will help give Kyara a voice again. She has been doing better and better at hitting a big button to communicate her wants.

So, although I am very sad Papa's passing, I know he is looking down on us and smiling from heaven. He is at peace and that is very comforting to me. And today was a good day from Kyara's stand point.

Release Date Postponed

2009-06-03T07:41:00.002-04:00

Kyara's new discharge date is for Monday, June 8th. She is working on pressing a switch to communicate, so we are meeting with a communication therapist before coming home.

My grandfather had a stroke this week, so we have been hectic trying to keep someone at both hospitals. This is a crazy time for all of us, I hope you are having a great summer so far. I enjoy having Skylar at home more. Now, if I can only get home with her more, that will be great!

Discharge Date Set...

2009-05-29T21:41:00.002-04:00

June 5th. A week from today. Wow. How should I feel about this one? It has been so long! I feel prepared to take care of Kyara. I am ready for us all to be under one roof again. I am nervous about how each day is going to go. I am disappointed that she is leaving and not going to get the intense therapy each day. I am excited to be able to do my own thing with her. I am angry that she has not improved more during her time at the hospital, but I am hopeful that being at home will help stimulate her and help with her recovery. I am concerned that by sending her home, people are writing her off. I have so many different emotions going, I don't know how to descibe them all. I guess we will just wait and see. Hasn't that been the rule since January? It is only appropriate that we continue... waiting. See what God has in store for us next.

Good news... Kyara has pooped some on the potty!! 3 days in a row she has gone on the potty. I think we are catching her at the right time, she doesn't go everytime we put her on, but she has gone on the potty 3 times!! YEA!! It is a start! Today she pressed buttons on command to turn a light machine on and off.

She also got the loaner chair that we will take home until her wheelchair is ready (could be months!) The loaner chair is HUGE and doesn't fit her, so I hope her custom chair will be ready soon.

This week we will be crazy busy get ready for Kyara to come home. Home-health is bringing her supplies over, including a hospital bed, sometime this week. I am not sure how we are going to fit everything in her bedroom. She used to share with Skylar and I am trying to figure out how we are going to work all of this. The girls' bedrooms are small (10x10), I think I need to empty the room out until they get the hospital bed in it and then see how much room we have left for a dresser and stuff. I think Skylar and Kassey are going to be sharing a room now, it just makes more sense. I know it will be ok...

Happy Memorial Day!

2009-05-24T22:25:00.004-04:00

I want to thank all of those who serve(d) for our country! Tomorrow is a great day to celebrate the sacrifice that has been made for our freedom. Thank you!

Kyara is doing well. She continues to become more aware of her environment and has moments that she appears to be answering questions with small head nods or shakes of her head. They seem to be appropriae to answers of "yes/no" questions, but we are not really sure. It is so hard to tell what you are seeing. I like to think that these "conincidences" are coming more frequently and consistently and that I will soon be able to say..."without a doubt, she is responding!" This week she has had serial casting done on her right arm. She was ok with the first cast which stopped at her wrist. The more recent cast comes down into her hand and she has not been so thrilled with this one. It will come off on Tuesday, and they will start casting the left arm. This is suppose to help with her range of motion in her elbows, wrists, and fingers. I hope it works. Right now she is still pulling her left arm up. She pulls her hand up to her chin at times. In fact the other day, I thought she was sucking on her fingers. Oh, that must be comforting to her... well, then she started to cry. Don't you know, she had clamped down on her pinky finger with her teeth! So much for comforting!

In speech, Kyara is working on cognitive skills and on moving her tongue. They are having her click her tongue and asking her to stick her tongue out. The speech therapist uses a sucker to entice Kyara and to give her some tastes. Speaking of taste, they wanted to start trying to feed Kyara by mouth a little, so the doctors ordered a saliva test to make sure she was swallowing her saliva and that it was not going into her lungs before allowing the therapist to give her any food. They did the test on Thursday. We got results on Friday. Well, Kyara did not pass the test. Her saliva ended up in her lungs. I feel it was an unfair test because she was flat on her back during and after the test. Well, in reality, she is almost NEVER flat on her back. Because of her gastric pullup, we always have her propped up to some degree. Also, she is not going to be fed lying down, so I think the test was unfair in her situation. Of course, I don't want them to do anything that would be dangerous for Kyara, but I would be interested to see if the results were different if she was sitting up instead of lying flat. My understanding is that we will do some more tests this week, so please pray for success.

Waiting was the subject in church this morning. Seems appropriate. I think I have heard enough about waiting in the past 5 months to drive me crazy. My job and my goal is to wait patiently for God to decided the perfect time to allow Kyara to come out. It says in the bible that Jesus tells his disciples something along the lines of.... it is not for you to know when, only that it will happen.~ I am working on releasing my frustrations, anger, and concern, and putting my trust in God and His promise.

Busy Weekend

2009-05-18T09:19:00.002-04:00

I know, I have been falling down on the job of the blog writer. To be honest, I haven't had the interest in writing lately, but I am going to get back into it. I think it is a good release for me as well as helps to keep everyone informed of Kyara's progress. I have also had times where I have looked back at it to let doctors know when she had a procedure done. So it is useful in many ways.

Friday Kyara had botox done in her elbows and forearm to help with her fingers. Since getting the baclofen pump her legs have been much looser, but her arms are tighter, so I hope the botox helps. They are goingt to start serial casting her elbows this week, too. This will give a constant stretch to her arms and hopefully help straighten them back out.

Kyara seems to be becoming more and more aware of her environment and she is getting stronger. After a week in the bed not allowed to be moved, she was VERY weak. We are seeing improvements in her strength each day, though. She still is not as strong as she appeared before the pump, but we are told that she was using alot of tone to move then, and she can't do that now. So, it is now up to her and her muscles to do purposefull movements.

Yesterday she was kicking her leg up to press a button that had Skylar's voice on it. Saturday, Kassey, Skylar, and I went to the hospital to eat dinner with Gunars and Kyara. She seemed to really respond to her sisters and lifted her head up a couple of times to look at them and look around. We are praying these things build on each other and Kyara continues to get stronger and stronger.

One last note: HAPPY 7TH BIRTHDAY, SKYLAR!!!!! I can't believe she is already 7! Where did the time go? We are so very proud of her. She is a fantastic daughter and biggest sister!

Back in the Gym Again

2009-05-14T17:21:00.002-04:00

It is Thursday and we are finally back in the gym again. This is good for all of us. I like seeing Kyara working in the gym and getting out of the room. I think the walls start to close down on us when we stay in the room for too long. With that being said, I am working on getting myself better, so I have been letting my parents and Luz Estela stay with Kyara more. I am trying to get more rest, and revive my engine for the next haul before we get to take Kyara home.

The rehab doctors have decided to botox Kyara's forearms, elbows, and flexors of her fingers tomorrow. She is still very tight, and the baclofen pump is not having the effect we had hoped for in the arm area. Her legs are looking pretty good. I noticed more stiffness in her left leg today when I tried to bend her knees, but they are still adjusting the rate of the pump.

Today Kyara had a good day in therapy. She was "kicking" a ball on command. She would kick her leg out 2-3 inches. She did better with her left leg than her right, but it was still good. She worked on head control and rolling over. Both of these things are more difficult now for a number of reasons (I am guessing, but they make sense to me!) First off, she has been in bed, unable to be moved for a week. Also, the baclofen pump takes away alot of her tone. She had been using the tone to assist her movements, so with the tone gone, it just shows how weak her muscles really are. Time for bodybuilding! In speech today she used to the switch button to let the therapist know she had a dirty diaper. Lindsay had a big button that would say "yes" when you push it. She asked Kyara a number of questions because Kyara was fussy and she was trying to figure out what was wrong. After a few questions with no response, Bunny said "Ask about her diaper." So Lindsay asked, and Kyara pressed the button. Sure enough, she had pooped and peed. So yea! She was letting them know what was wrong.

Overall, I am glad to get back into rehab. I appreciate everyone's concern for Kyara and for the rest of our family. We are very fortunate to have the love and support of so many. It has really meant alot, especially for the last week. I praise God for the progress Kyara has made and look forward to seeing more steps in the positive direction.

Monday, and Still No Therapy

2009-05-11T20:48:00.002-04:00

It is Monday, and they had said that she could resume therapy today, but as my title suggest, it did not happen. The neurosurgeon came in this morning and was surprised that she did not have bedside therapy this weekend. He said to get bedside therapy today and tomorrow and then she could go back to the gym on Wednesday. Of course, by the time orders got in, she didn't get any therapy today because she was not scheduled. Now I am told they will not get her back in the gym until Thursday. I am VERY frustrated with this.

She had the dressing on her incisions removed today. Praise God they look good. She has 14 staples in her abdomen and 5 in her back. The incision sights are clean and look great, though. I don't knwo when they are going to remove the staples, but I guess they will let me know when its time.

Kyara has been up and down lately. The doctors are still adjusting the baclofen amounts while they decreased most of her other medications. She is off the methadone and valium, the clonodine patch is off, and there is one or two other meds that she is off, too. Klonopin is the next drug to go off, although, the rehab doc on service now is talking about increasing it because it is suppose to help with agitation. And talk about agitation, when Kyara is upset, she has some lungs on her!

I am not fairing as well lately. I am not sure why, but I am feeling much more heartbroken and depressed lately than I have in a while. This weekend has been tough with it being Mother's Day and seeing my family and everything. I am trying my best to play with Skylar and Kassey and stay positive in all respects, but I am having a hard time with it. In fact, I had to call my parents last night to relieve me at the hospital because I could not get myself together. I don't want to have negative vibes around Kyara, so my dad came up and stayed and I went home and had Gunars just hold me. I think having Kyara just lying in the bed again has really had an effect on me. I am tired, and I am trying to take care of myself. I am praying that God will comfort us and heal Kyara. I am trying to let go and let God take over, but I am having a VERY hard time with that. How do you just hand it over and not worry? I know that is what I should be doing, but I don't know how.

Happy Mother's Day!!!

2009-05-09T21:17:00.003-04:00

To all the mothers out there, Happy Mother's Day!!! It is a day for rejoicing in the beauty of being a mother! Have a wonderful day!

Kyara is doing better with the baclofen. Still not perfect in terms of tone, but better. Legs are a ton better and arms are getting there. She was moving and opening and closing her fingers tonight, so that is good signs. Since she has been bed ridden since Wednesday, Kyara is starting to swell some. Her face is definetely swollen and her feet are tight, like they have a lot of fluid pooling in them. The doctors assure me that when she gets up on Monday and starts moving again, this issue will start to resolve. She is also still crying and fussing a good bit during the day. This can be seen in two ways. Either this is just the way it is, or she is waking up and trying to communicate with us. I pray that it is that she is trying to communicate and this is a phase she is still going through. The doctor said this is his "hope." His hope? What is that suppose to mean? How do I take that? I hope to win the lottery. That doesn't mean my chances are very good. I am going to pray that Kyara is trying to communicate and that this is a step towards her waking up more. I think praying is better than hoping.

I had a nice dinner at my parents' house tonight with my brothers and their families, my parents, and my Nannie and Papa (Bunny's mom and dad). It was once again a very bittersweet time for me. I loved seeing all the cousins out playing together, then would cry realizing that one cousin was missing. Gunars was not eating with us, Kyara was not there, and so the night felt wrong to me. I know that Skylar had a good time, though. She told me last night that she is sometimes very lonely. Can I blame her? She said she can't wait for Kyara to come home so she will have someone to play with. Oh, my heart sank. I tried to explain that Kyara is still recovering and that when she comes home, she is not going to be like she used to be. How do you explain to a 6 year old? I don't know. I have had a tough weekend at home. Gunars has been spending the nights at the hospital and I just miss him so much. Although we see each other a little here, a little there, it is not enough.

Ok, enough complaining. Get it together, girl! There is much to be thankful for. I have a wonderful husband, 2 healthy, happy girls, Kyara is responding to the baclofen better each day, I have the love and support of my family and friends. God is watching over us, and leading us towards brighter days.

Day After Surgery

2009-05-07T23:08:00.002-04:00

I wrote a long post about 2 hours ago and for some reason, I was not able to post it. Since it didn't save it, I will try to summarize. Of course the other one was brilliant (haha), so this one will be a sorry replacement. :)

Last night my mom stayed with Kyara so I could get home to a doctor's appointment. Everything is fine, just need some of my own medication. Dealing with everything that has gone on here has really worn on my nerves and I am finding I have a hard time controlling my moods. When we are in therapy and Kyara does something new or follows commands, then I am on cloud nine, when we are back in the room alone, at night when she is crying and I can't calm her, or even on the drive home when my mind wanders I can get into a very low sad state. I am working on staying positive and trying to block the negative thoughts that butt their way in.

Kyara slept most of the night last night and half the day today. She is still recovering from the baclofen pump surgery and she will be on bed rest until Monday. No therapies. I don't understand why she can't have at least speech come in. She doesn't have to move for speech. Well, I am going to ask about that in the morning. So far, she seems to be recovering well. We are still on the watch for infection, and please pray that she doesn't get one. That would mean surgery to remove the pump and then not being able to replace it for MONTHS! I can already tell a difference in her legs when I changed her pants. Much easier. Her arms and hands are still very tight, though, so the doctors still have work to do with the meds. As the doctors go up on the baclofen, we are coming down on some of the other meds: valium and dantrium. She also had her last dose of methadone tonight! YEA! I am glad we are able to start taking some of these drugs off! I am praying that Kyara has a peaceful night tonight and a good day tomorrow.

I was home most of the day today. Since Kyara was sleeping soundly, and my mom was with her, I took the opprotunity to stay with Kassey and Skylar. Kassey was actually sick this morning, so I ended up taking her to the doctors. She liked it much better today than last week: no shots! After three visits to the pharmacy, they finally had her presciption at 5:00 this afternoon. I was also able to get Skylar off the bus today. God, I have missed doing that! Thank you for the chance today. I think Skylar was pleasantly surprised, too. She asked if I would be there tomorrow when she got off the bus. "Sorry, Sweetie, but no." :( I took Skylar to karate and ate dinner with the girls, Gunars and Luz Estela before heading back to the hospital tonight. My mom was a trooper staying all day for me. I think she enjoyed the quiet time to read while Kyara was sleeping.

So, tonight I am thanking God for the blessings He gave me today. I was able to spend most of the day with Kassey and Skylar. I was able to step back into the real world, for a day and do the things I would have normally done. It is amazing how much I have missed these little things. Getting Skylar off the bus, taking Kassey to the doctor, doing the "Mom" things. I am praising God for the change in Kyara's legs and I am asking Him to lay His hands on Kyara. To allow her brain to make the connections that will bring her back to us. I pray He comforts us as we push forward each day, that we can see His miracles and take the time to notice the blessings He gives us each day.

Surgery is Over

2009-05-06T14:21:00.004-04:00

Kyara's baclofen pump surgery is done. She is back in the room with me and snoozing. This is good, because she did not sleep last night. I guess she was as nervous as I was! We were up together from 2:45 am on. Everything went well with the surgery, so now we have to wait for the recovery to take place and for the doctors to find the right dose of medication. Pray it will go smoothly and quickly!

She's waking up...not a happy camper! :(

Baclofen Pump Surgery

2009-05-05T22:15:00.003-04:00

Well, I have been waiting and talking, talking and waiting for this day to arrive. Tomorrow Kyara goes in at 9am for her baclofen pump surgery. After all of the wanting and waiting, I am now TERRIFIED of another surgery. I am praying that the surgery AND the RECOVERY will go smoothly. Kyara has not been known in the past to recovery quickly from surgeries and I pray that this time she will beat those odds! At this point, I am nervous about our decision to put her through this surgery. I saw the trial and how much more relaxed she was, but this is an elective procedure. If things don't go well, will I be able to live with myself? I do know that she is uncomfortable alot of the time, and that the best thing for her is to get the pump. So - I will be praying hard tonight and in the morning that God will watch over my little one and hold her tight tomorrow. He knows what is in her best interest and I thank Him each and every day.

I am rambling again. I hate feeling like I am fighting with myself over Kyara's care, but who wouldn't. You have to weigh the pros and the cons. The risks and the benefits. I pray that this time the benefits will win out. That is what is suppose to happen, after all.

Today Kyara had a decent day in therapy. She worked some more on rolling and holding her head up. She also had some testing done. The Coma Recovery Scale is done each Tuesday to see if she is improving each week. She has certain tasks that they need for her to do to get points on the test. She improved this week by 3 points! Yea! Sadly, she is still considered by the test to be in a vegetative state. I don't know if I agree with that. I don't think she is wide awake and alert to her environment all of the time, but I don't think she is vegetative either. She is beginning to respond to commands better (not great all the time, but better), she is localizing touch, she is fixating on objects, and she is beginning to have more puposeful movements. What I have to remember is that the test is like a snapshot picture taken once a week. She has done things in therapy sessions that she did not do during "test time", and these things cannot be counted (even though the therapist doing the test are the same ones that have seen her do tasks during therapy session). This is VERY frustrating to me. I wonder how Kyara will do next week and the week after, after the baclofen pump is in and they have a chance to get the medications right. I hope she will have better motor responses. Either way, in the long run, I know she is improving each week and the score is still showing that. So, what more can you say? Keep working hard, Kyara.

I met a couple of other families who have children here in the rehab unit. The families are all very nice and the kids here are amazing. The kids range from burn victims, car accident survivors, a car surfing survivor, ATV accident, and anoxic brain injuries. The improvements that the kids make is astounding. I can't believe my eyes. God works miracles here everyday!

Found It!!!

2009-05-04T20:38:00.002-04:00

The camera has been found! Yea! That is a load off! I knew I put it someplace "safe." And it was certainly safe, I couldn't even find it anymore! It was actually at the hospital in a drawer. Lately, things are out of sight, out of mind for me. But now it is found and I can exhale a deep sigh of relief.

Kyara had a good weekend with Gunars. The girls and I went up and visited some on Saturday, and then I went back up after Skylar's soccer game on Sunday and spent the night and most of the day today with her. She is still working on rolling, pressing switches to play music, and the "yes"/"no" cards. Today she appeared to "smile" on command. The speech therapist asked her to smile at me, and she kinda got one side up a little. Not enough to show her sweet dimples, but enough to brighten her face. Lindsay, the speech therapist, has told me that smiling on command is a difficult feat for kids. They usually will smile because of happiness first. Well, I haven't seen much of that. I pray it will change after she gets the Baclofen pump and is more comfortable. I also have a fear that I am putting too much stock in the Baclofen pump. Am I building it up to be the miracle drug? And how will I handle it if it doesn't solve Kyara's muscle tone and crying issues? I guess being aware of these issues is the best course of action. I just remember how excited I was to finally be going home, and the let down I had when Kyara had a difficult time with the transition.

Kyara has been wowing some of the Physical Therapists by bending at the hip and knee and shifting her weight to help with rolling. Of course, she still needs quite a bit of help, but we are getting somewhere! Oh, and Lindsay also told me today that she is hearing Kyara make different sounds when she is crying. This is a move towards talking again. YEA! We thank God for each step she takes!

Still Can't Find My Camera!

2009-05-02T21:14:00.003-04:00

Oh, NO! I don't know where my camera is!! I have looked all over my house, my car, and the hospital room and I can't find it anywhere. Last time I remember having it was at the house, I downloaded pictures onto the computer, so where is it now... I hate not having it.

On to Kyara...

Kyara is finally at goal feeds! YEA! This means the IV nutrition (TPN) is officially off! She is just getting feeds through her J-tube now. This is a big steps and we are praying that her colon doesn't start acting funny again. One thing I have noticed is that she has had a couple of times where she threw up a little bile. This is not terrible, but I wish it wasn't happening. With her stomach so far up in her chest, it is not surprising that she has so reflux. If we don't have her propped up high enough, or if she coughs, sometimes she has some bile come up. Again, not a huge deal, but something that I wish didn't happen.

My poor dad had a rough night and day today with her. Last night she woke up around midnight and didn't go back to sleep all night! Then today, both her NG-Tube and her J-Tube were pulled out!! My goodness! What a day! She was pretty upset most of the day, but Gunars is with her now and said she has calmed back down.

We are still waiting to hear when the baclofen pump surgery will be. I am anxious. I hope it is soon rather than later. The earliest will be Tuesday, but I have not been told an exact date yet. This leaves me in an ackward position. I am trying to arrange help for the nights (between my mom and Gunars' mom) but I want to make sure I am there before the surgery. But, since we are inpatient and this is an "elective procedure" we don't have a scheduled time. I guess they figure they have us there for whenever they decide they can do the surgery.

Kyara continues to show signs of improvement. Yesterday, before I left, Kyara had speech. The speech therapist, Lindsay, used two cards. One had a smiley sun and the word "yes" on it, the other had a large red X and the word "no" on it. She showed Kyara each card and explained to her what they meant. She then asked her to look at the "Yes". Kyara did. She asked her to look at the "No" (which was to Kyara right, this is the direction Kyara has a harder time looking towards) and after a second or two, she looked at the "no"! Then Lindsay, asked Kyara a question, she reminded Kyara what the cards meant and told her to look at the answer. Kyara answered 3 or 4 questions properly using the cards!! YEA!! We are suppose to work on this a couple of times a day for 10-15 minutes. Lindsay said that this is like exercise for the brain and that it can be very exhausting! I am thrilled that we are working on a way for her to communicate with us! I know she is in there and each time she does something like this, I am thanking and praising God! He is continuing to hold Kyara up and help her heal. His time! Slowly, it is coming!!!

Where Is My Camera??

2009-05-01T11:22:00.001-04:00

I have it when I don't need it, and when I need it, I don't have it. So what is it? MY CAMERA! We are not allowed to take pictures or video during therapy sessions, so I have not been good about bringing my camera to the hospital. I need to get some pictures of Kyara up, though, so this weekend, I will be sure to bring it and use it!
I know it has been a few days since I last post, but that is because we have been busy. Busy is good. When we would just sit around, I had more time to post, but now, Kyara is in therapy or we are going for walks (well, she rides) outside. I also do stretching exercises with her in the bed in the morning and at night. She is one BUSY girl! Lately she has been holding her head up better and better. She is also focusing on objects and sounds better. Yesterday I took her outside for a walk and she held her head up in the wheelchair for almost 45 minutes. Her wheelchair has a tilt feature so I can lean her back so her head will rest on the headrest. Yesterday I had it sitting straight up! That was the first time I have been able to do that without her head resting on her chest! Yea for progress!
Last night we were sitting in her bed and she was calm. I was holding her in a cradle hold (like a baby) and I THINK she said "Mom". She was not making any noises and this just came out of nowhere. Of course I tried to get her to say it again, but to no avail. I pray I really heard what I think I heard. I know that I can get desperate for a sign of progress and that I may have heard a moan and thought it was "Mom." I am very aware of this possibility, but I still think I heard it. I pray God was giving me a new sign of progress.
Kyara is still working on rolling and using switches to turn music on and off on the computer. She has gotten a reputation of playing possom at times in therapy,too. Isn't that like Kyara? It is amazing how much more awake she is after 5:00pm when therapy is over. Or even when I put her back in her chair and we leave a therapy room. Suddenly eyes are open and she is looking around. Silly girl! Now is NOT the time for that Kyara!!
Thank you all for your continued prayers. I also want to say thank you for donating to Kyara's fund. I don't know how to send personal thank you notes to everyone, so please know that your kindness and generosity has been greatly appreciated

Bring Back the Baclofen!!!

2009-04-28T22:44:00.004-04:00

Yesterday was such a great day. I loved seeing Kyara so comfortable and NOT upset. Unfortunately, the baclofen wore off. It is very frustrating to see something work so well, then not be able to give her the same relief the next day. Since yesterday was a trial, we now have to wait for the neurosurgeons t schedule her for the surgery to put in the pump. It is looking like it won't be until NEXT WEEK! Oh, come on! She NEEDS the pump and the medication... NOW!!!

Today was a very difficult day, especially after comparing it to yesterday. Kyara has cried and moaned all day. She is not arching off the bed, but she is not comfortable either. I took her outside for a while after therapy, and she was not happy there, either. BOO :( I am hoping she is going to rest tonight, though. She needs it.

So now for the good: She is working hard in therapy. She is still not holding her head up much (I have seen her do it better in the past), but she IS helping more with rolling over. This is exciting news, I pray she gets it down. She has difficulty moving her whole body over because she is still very weak. But, Monica, the PT, is really encouraging. She said Kyara is doing all the right movements to roll over. She is only helping with shift the weight. She only helps when she feels Kyara trying. I worked with her a little this afternoon in her bed, and I was shocked by how much of the rolling she really did. Especially once she got started. She bends her knees, hips, and torso to roll. She also turns her head and shifts her shoulders to roll. This is all GREAT stuff! Kyara also focused on some pictures I brought in today. I held a picture of her and Skylar up, and she shifted her gaze as I moved it from one side to the other. She is still a little delayed on shifting her gaze, but she is finding the picture after about 3 seconds. That is something she wasn't doing consistently a week before. She did it 4/4 tries with me today! I also held up a picture of Kassey in my left hand and the picture of Skylar and Kyara in my right hand. I told her to look at the picture of Kassey. I purposely put this picture to Kyara's right side because she tends to be left dominate. She looked at both pictures, then settled her eyes on KASSEY! YES!!

In other news, Kassey has a nasty runny nose, with green slime pouring out of it. Poor baby is having a hard time sleeping - can't suck on her paci and breathe at the same time! I took her to the doctor today and they said it was just a cold. While we were there, we did her 12 month checkup (we were only 3 months late!) Kassey ended up with a cold and 3 shots. That was not her idea of a good time. I think she would prefer to leave the doctors' visits to Kyara!

Skylar is doing well. She is growing like a weed. School, karate, and soccer are keeping her busy.

I am suppose to talk with the neurosurgeon tomorrow, so I am anxious to hear when we will do this Baclofen pump. God has control of it. It will happen at the perfect time. I hope it is soon, I would like Kyara to have relief. After the pump is in, I am told it can take up to 2 weeks for them to get the dosing right, so it is not immediate relief for her. Again, I pray the surgery is soon.

Baclofen Trial

2009-04-27T20:37:00.002-04:00

So today Kyara had the baclofen trial. She was scheduled to go down to interventional radiology at 9:00am. Well, at 9:20 we were still in the room waiting for her turn. Welcome to hospital timing. I understand, though, it is more important to take care of kids who are not stable than to do a baclofen trial. So, we waited. No big deal. Once we were finally down, they informed me that I could wait back in her room. I was not allowed to stay with her. A little nerve racking, but ok.

I went back upstairs and I was met by my cousin, his wife and daughter, and my aunt. What a nice surprise, except they were there because Maggie needed testing on her hearing. Turns out she needs hearing aids. That stinks. We had a nice visit and Kyara returned before they left.

The therapist, Priscilla, who was helping with the trial had come in before Kyara's procedure to get a baseline on her stiffness. She could not even bend Kyara's knees. She came back once Kyara was back and said she would be testing Kyara at 1 hour, 2 hours, and 4 hours after the procedure. She said not to expect much at the 1 and 2 hour mark, but we should see results by the 4th hour.

At the 1 hour mark, Priscilla came back and started moving Kyara's legs and ankles around some. She said there was already some improvement. By the 2 hour mark, Kyara was obviously better. And by the 4 hour mark she was great. She was able to sit in her wheelchair with out "bucking"out of it. She did not moan, groan, arch, or cry all morning and most of the afternoon. She was obviously more comfortable. YEAH!!

THE BACLOFEN TRIAL WAS A SUCCESS!!

Now the question is...what next. The trial dose wears off after about 8 hours, so Kyara will be back to how she was yesterday. The rehab doctor is consulting with neurosurgery to have Kyara scheduled to have the baclofen pump placed. This will be a surgery, but a good one. It will give Kyara so much relief. I want them to do it YESTERDAY!!!

During PT today, Kyara gave me a small grin. She smiled! Oh, be still my heart! I was totally thrilled. I was talking to her about how she had a picnic in Skylar's bed before we went to Michigan. She had been eating shredded cheese and she was on the top bunk. there were so many stuffed animals, I didn't even see Kyara at first. While I was telling her about this, she smiled at me. It wasn't a huge Kyara smile that shows her dimples, but it was definitely a grin.

Thank you God for the wonderful steps today. There is so much for us to be thankful for. Kyara is also working on operating push switches to turn a computer on and off. She worked hard on this on Sunday. She used her foot to step on the switch to play music.

I am thrilled with the progress Kyara has made in the one week we have been on the rehab floor at Scottish Rite. Her belly is doing great, she is getting closer to full feeds and off the IV nutrition. She needs her feeds to be at 70ml/hr and she is at 50 ml/hr. She is going up by 5 ml/day, so we are getting there. She should be at full feeds in about 4 days.

I know I am rambling tonight, but I feel like a I have hope again. Just when things feel like they are at their toughest, God smiles on us and shows us new ways that Kyara is improving. She still has a LONG way to go, but as long as we continue to move forward, what more can we ask for?

Are You Looking At ME???

2009-04-25T21:00:00.003-04:00

I uploaded some pictures. Some are from the transfer to Atlanta on April 13th (sorry, they are a little late) and there is one of Skylar and Kyara outside this afternoon.

I really think that Kyara is starting to see us better. This afternoon, we were outside by a koi pond. I bent down to Kyara's right side (which she has a preference to her left and alot of times her eyes will roll up) and said, "Kyara, look at Mommy." She looked directly AT me!!! Down and to the right. She looked directly at my face and held it there for a number of seconds. Last night she also gave the respiratory therapist a hard time when he was trying to give her the flovent inhaler medication. They have the inhaler attached to a tube and mask that fits over her mouth and nose. When he put the mask on her face she started to shake her head side to side like she was saying "NO."

For those of you that know Kyara, you know that she had a mind of her own. She was known to play "possom" with doctors and therapists. Lately, it seems that she is doing that again. She will "sleep" sometimes in therapy and amazing enough, as soon as I put her back in her wheelchair to leave, her eyes pop open and she is awake. Kyara...you silly girl, the therapist are there to help you! Please don't play games now! Another thing she did this afternoon in therapy - When the therapist asked her to squeeze her finger, Kyara OPENED her hand. Now that could be interpreted in several different ways. 1- It was a coincidence that her hand moved at all. 2- She was trying to squeeze, but hasn't figured out how to make her hand do what she wants. 3- She didn't WANT to squeeze the therapists finger and so she opened her hand instead. Had this happened 3 months ago, I would say without a doubt that it was option number 3. Especially since the therapist on the weekend is not the same therapist she has been working with all week. Also, last night, Gunars said Kyara made a face that was "SO KYARA." He was explaining to my dad about the arm splint and when to put it on, and Kyara made a face that showed that she was not happy with the arm splint. From what Gunars told me, it was a face that Kyara has made many times before her injury. To us, this would mean that she heard Gunars talking to my dad, she understood what he was talking about, and she did not like it. I like to believe that she has the cognitive ability to have understood everything. I pray this is the case.

I am still having a hard time coping with Kyara's injury. I am learning each day to be thankful and celebrate the little things she does. When I think about how she was before the arrest, my heart breaks. That Kyara is not my reality anymore. I don't know what the future holds, but I do know that God is taking each step with us. I believe He is showing Himself each day in Kyara's recovery. Somedays we just have to look extra close. Please continue to pray for Kyara's recovery. I know He is listening.

Good Moves and a Little Scary

2009-04-24T20:33:00.002-04:00

First for the good stuff. Kyara slept much better last night than she has in quite some time. She slept from midnight until 2am, then she was awake until 3am (when I realized she had a poopy diaper), and then slept from 3am until 8am! The speech therapist, Lindsay, had to come in to wake us both up! I then took a shower while Lindsay worked with Kyara in her room. She said Kyara consistently looked in the direction of noise around the room. Yeah! Lindsay said she wasn't sure that Kyara was seeing her, but she definitely looked in her direction when she would call her. There is a delay of about 3 seconds after we make a noise or call her name and when she starts to gaze shift. This is not unusual with brain injuries, and I am thrilled that she is responding to the noise.

So that was one good thing that happened today. Another good thing was that Kyara is beginning to help with rolling over. Yesterday the PT, Monica, had to help support Kyara's hips and shoulders when she would roll Kyara onto her side. Kyara would make minimal effort in helping, just a slight bend in her knees. But today, Kyara was really helping much more. She would roll her shoulders and move her head in the direction of the roll. Monica did not have to support Kyara's shoulders at all today. In the later sessions, Kyara also began to bend her legs much more and bend her trunk to help her roll. She would then keep herself on her side. At one point, she started to roll back on her back, but then pulled herself back onto her side more! Wow! Praise GOD!

I believe Kyara is focusing better at times. Yesterday she seemed to be looking at us more and REALLY seeing us. I hope this is the case. I didn't get the same sense today, but then again, she was working on rolling...so she was tuckered out by the end of the day!

The scary news... Kyara's blood work shows that her hemoglobin level is down to 7.9. Normal is 12. This is scary because the hemoglobin is what carries oxygen in the blood. If hers is low, then she has to work harder to get all the oxygen she needs. Right now her oxygen saturation levels are still very high, and her heart rate is ok, so she seems ok. But the more I think about it, the less secure I feel. I am going to talk to the doctors again in the morning. Her heart rate has been higher since we have been here in Atlanta than it was in Michigan, so I wonder if her heart is having to work harder because of this low level. One way to correct it is to do a blood transfusion. Kyara has had them before. If it will help, then I am all for it. But, I think the real question should be "why is the level low?" She is not bleeding. Her labs look good, otherwise, so why is the hemoglobin low. The doctor said her level has been low since she got to Atlanta, but I don't know what it was in Michigan. If any of my friends there at Motts can find out, please post so that I will know. I would greatly appreciate it!!!

Finally, people have been asking how they can help. Well, I have a specific prayer request for Kyara. On Monday, we are scheduled for the Baclofen trial. This is the drug that will go into her spinal fluid to help reduce her muscle tone. I am praying the trial goes well, and this drug relieves Kyara's discomfort. If the trial goes well, we will be scheduled for surgery later in the week to place a pump in her abdomen and a catheter in her upper back. Please pray for the success of this trial and procedure.

3 Months In...

2009-04-22T21:16:00.003-04:00

Yesterday was the official 3 month mark. Hard day, hard night. Kyara did not sleep well last night and had a very busy day in therapy yesterday and today. I am sad to see that we have made it to 3 months and have not made as much progress as I would like to have seen. I keep telling myself that she has setbacks, with the colon and the dystonia (muscle stiffness/spasms). I am not sure what to think at this point.

Today has been difficult for a number of reasons. Kyara has been arching and fussing most of the day, her stomach looks to me to be more distended than it was this weekend, so I wonder if we are headed back into having more colon issues. Maybe the iliostomy is the right descision. Take the colon out of the game and see where she is, but then, is it what she really needs? We are still planning to do the Baclofen trial on Monday, and maybe that will be the best thing. If the medications is what is causing Kyara's issues, she won't have to be on as many with the Baclofen pump. I am praying that this is the course that Kyara will take. I pray the Baclofen will make huge improvements in her muscle tone and discomfort and that her colon will settle back down.

I know Kyara is in there. Today, when the OT was showing me some stretches for Kyara, she did one arm and had me do the other. She wanted to make sure I knew how to do the stretches. Well, when she would stretch Kyara, Kyara would fuss and complain. When I would stretch the other arm, I got a better stretch sometimes, and she did not fuss at all. There are brief seconds that Kyara will look at me a really focus on my face. The speech therapist mentioned that she sees Kyara doing this, too, and that she has had other kids who don't recognize their parents. I pray that the brief moments will begin to lengthen and Kyara will know how very much we love her.

Today I met with a support group in the CIRU (Comprehensive Inpatient Rehab Unit) at Scottish Rite. It was nice to meet some other parents and know who their child was and just give each other some support. They were all so uplifting and positive. I was a crying mess. Well, I suppose that is the idea of the support group. When one is down, the others are there to help them. One thing that really struck me is how faithful everyone there is. Of course, it is easier to stay faithful when you are seeing your child heal, but to hear the praise of God was comforting. It reminded me of the church sermon I heard this week (I finally went to church this Sunday.) The sermon was about the evening of Easter, and how the disciples were hiding out behind closed doors. Jesus appears to them as says "Peace be with you," Even when I am struggling with my faith, with wondering if God is listening to my prayers, and questioning why Kyara's miracle hasn't happened yet, Jesus still loves me. He is here, he wants me to have peace and know that He is taking care of everything. I have to trust in that.

By the way, I don't have a computer at the hospital, so I will not be able to post as often as I have been. I am staying there everyother night, so when I am home, I will post. I wish I could do it more often, I find it to be a therapeutic release, but...I will post when I can.

First Day of Therapies

2009-04-20T20:45:00.003-04:00

I spent the night with Kyara last night. After a weekend of sleeping at home, it was difficult to go back. She was storming most of the night and I was very frustrated with it. I tried everything I could think of to calm her: relaxing music, position changes, pressure points, decreasing stimulation, etc., but nothing would work. Finally, around 5:30 am, she fell asleep. What a night. She then slept until 10:30 when our new PT came to work with her. Oops. I let her oversleep! Ha!

Kyara had a very busy day. She had 2 sessions of PT, 1 session of OT, and 1 session of speech. Then the speech therapist and the OT did another evaluation of her to score her for insurance purposes. This will be a score that they use when they talk to insurance about her progress and her need to stay in therapy. During PT today, Kyara held her head up by herself for a minute or two. She also worked on rolling over, with help, but still. The PT was impressed with Kyara moving her right knee into flexion a little to help her roll. Of course, Kyara need a lot of help, but ...baby steps.

I talked to the Rehab doctor today about a new approach to Kyara's muscle tone and spasms. The Rehab doctors believe Kyara needs a Baclofen pump. This is a pump that is imbedded in her stomach and has a cathater that would be inserted in her spinal cord. It would give her continous medication into her spinal fluid. This is suppose to be more effective than any oral or IV medication we can give her. They are discussing doing a "trial" next Monday by doing a lumbar puncture and administering a hefty dose of the drug. If it helps, they will do the surgery to place the pump soon after. I am a little nervous, but from what I hear, this can be life altering for the people it works for, so I pray it works for Kyara.

After I therapies, I went home for the night. Dad came up to stay with Kyara until Bunny comes after sorority. Kyara was pretty upset when I left, so that made me feel very sad again. But, Dad called about 8:30 tonight and said Kyara was awake and calm!!! Her heart rate was down in the 110s-120s! What a difference! I pray it stays this way and she has a good night sleep.

First Full Day on Rehab Floor

2009-04-18T21:59:00.002-04:00

Today was a BEAUTIFUL day in Atlanta! This morning we had a yummy breakfast (thanks Luz Estela for cooking pancakes!) and headed out to Skylar's soccer game. I have missed watching her play so much. Just to be a part of her life again is wonderful. She played well, and scored a goal (just for you, BJ!) I am very proud of her. She has been so tough through this time. I know that this must be taking a toll on her and she is not showing us. I am worried about her and I want her to know how much we love her.

After the soccer game, we piled in the car and headed up to Scottish Rite to see Kyara and to relieve my dad (he spent the night last night). Kyara had an ok night, but is still did not sleep. Dad said she seemed more comfortable, but her heart rate is still much higher than I am used to seeing it. This morning she was back to having a very high heart rate at times, and she goes through tense phases that come like waves. The nurse has asked us how long one of her storms lasts...it is more like how long is she relaxed? When she is "storming" it can last for days. But now that we are on the rehab floor, I am hoping we will learn some new techniques to help calm these storms and help her relax.

The GI doctor on call from Dr. Meyer's office came in to see Kyara this afternoon. He didn't have much to say, except that we are waiting for the probiotics to come in. The kind Dr. Meyers wrote for is not stocked at the hospital, so I guess they had to go out somewhere to get it. The doc said sometimes they will run over to Northside Hospital to get meds that are not stock. For those of you who are not familiar with the area, Northside is the regular (not children's) hospital that is across the street from Scottish Rite. Anyway, the probiotics came about an hour later, so Kyara is now officially on them. I pray they help!

We also met one of the recreational therapists today. She went over alot of the ins and outs of the rehab floor and asked questions about what kind of things Kyara likes. Did she play with Barbies? NO. Does she like computer? YES! She wants to narrow down the toys Kyara liked to play with so that they can incorporate them into her therapy. Because Kyara was admitted late last night, she was not on the schedule for therapy evaluations today. But, we have the schedule for tomorrow and she is going to be busy! From 8:30-2:30ish she has evaluations with OT, PT, Speech, and Music Therapy. She has an hour break in the middle for rest.

I am ready for them to get started on Kyara. I am ready for her storming to get under control. For her to be awake and comfortable. It is so difficult to see her storm. I am wanting to put this is God's Hands...but how? How do I let go and just say...Here.? I want to. I know that He is the only one with the power to heal. I am finding that I am having a very hard time dealing with Kyara's injury. At first it was...ok, give it some time and she will get better. Then it was, her colon is causing her pain and that's why she is not doing better. Now I am not sure what to think. It has been almost 3 months since her cardiac arrest and I am scared. One day at a time, that is what I keep being told...easier said than done. It is very painful to watch her and not know how to help. It is excruciating to be with her...and to be away from her. Those who think I have been strong...I am not strong. I am barely holding on at times. I try my best to keep it together for the sake of my family. I am trying to think positive thoughts, but the fear keeps finding its way in. I wish I could only write happy things in the posts, but I want to be honest with myself... I write the posts in a matter of fact way most of the time because by not putting too much emotion in it, I can stay solid. As soon as feelings are involved, I break down. I am a fixer. If you have a cut, I want to put a bandaid on it. And this is something I cannot fix. If anyone has a good suggestion for a psychologist in the south metro or Atlanta area, please share their name and number.

I believe that God will help Kyara. I still believe God has a plan. I wish He would listen to mine, though. Why doesn't He ask my opinion? I know His plan is a perfect plan, but I am not understanding it. I pray we are going to get some results with the new rehab schedule and therapists. Please keep praying for Kyara. She is an amazing girl and we have to find a way in so that we can reach her.

Rehab: Here We Come

2009-04-17T21:58:00.002-04:00

Today Kyara has been doing much better. Her storming seems to have subsided and she is more relaxed. Her heart rate is still up in the 130s, which is higher than it has been recently, but MUCH better than the 180s-190s we were seeing for the past few days. Her belly is also much better. It is almost flat, it is not nearly as distended and it is soft again. Yeah. I wish we knew what happened, and how it was resolved, however...Kyara is a mystery. The doctors are not sure what is driving the colon issues. This is frustrating. All I can think of is that God heard our prayers and has given her some relief. There is no medical explaination for her improvement today. The medications from the rehab doctor seem to be helping, but even he said, if she is storming, there is not a whole lot he can do to stop it. So, it still seems the colon in the culprit. Get the colon under control and the storming seems to be under control.

So today we had a team/parent meeting with Dr. Meyers (GI), Dr. Solas (rehab), Dr. Bleacher (surgeon) and Dr. Davy (ICU doc). We went over the plan for Kyara... we are going to restart feeds in her j-tube tonight, and try giving her probiotics. Probiotics are the "good bacteria" that are in digestive tract. Since she has been on some major hitting antibiotics, the docs are wondering if it has disturbed not only the bad bacteria, but also the good bacteria. To an antibiotic, bacteria is bacteria. If these things don't work, then we will be considering doing a diverting ostomy. This will take the ileum (between small intestines and colon) and bring it to the outside of her body. She would then have a bag attached to "collect" stool and allow gas to escape. This is a surgery that would be reversible, but would give her colon a chance to fully heal with nothing going in it. Scary, but if that is what it takes to make her better and have a good chance at rehab, then I am all for it. I can deal with poop bags alot better than storming and her being so uncomfortable for days at a time. We will see. Hopefully, the colon is now feeling better after the flight and will begin to heal better. I hope the probiotics do the trick and we don't have to worry about an ostomy, but only time will tell.

Kyara was deemed stable enough to move to the rehab floor tonight! Thank you God! I am ready for them to start working on her. Dr. Meyers, Dr. Sholas, and our nurse today all said they saw Kyara looking around, seeming to take in her environment. She is shifting her gaze to noise. I believe Kyara is in there, and the nurse said after working with her for 8 hours today, she felt she was in there, too. This is the first time anyone has gotten to see this side of Kyara since she has been in Atlanta. And she does even a little better than this, when she is feeling good. I think they have something to work with, so I have high hopes for getting Kyara in the rehab here. I also want only positive people working with Kyara. If you don't think Kyara is going to get any better, then I don't want you working with her. I am well aware of Kyara's injury and how significant it is...but some people still recover. I am not going to give up. Gunars was telling me about an article he read where they are removing an entire hemisphere from people's heads to treat epilepsy, and these people recover! So although Kyara injury is global (all parts of her brain) I still have to believe in her.

Finally, I want to say Thank You to my mother's sorority for putting together a fundraiser for Kyara tonight. I was so touch and I had a very hard time expressing my emotions properly. For that I am so sorry. Words can not express the gratitude we have for the help you have given us. I was blown away by the love and support of so many people. I could not help but to burst into tears walking in the door tonight. Please excuse my behavior, I know I was a bit stand-offish, but I was trying hard not to burst into tears the whole night. I was just overwhelmed, thankful, humbled, amazed, and felt total love. Thank you so very very much.

God has done 3 great things for us today. He has helped Kyara become more comfortable, He has gotten Kyara to the Rehab floor and hopefully she will begin therapy tomorrow, and He has brought many wonderful people together. We are very blessed.