Kyara's Eulogy

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

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

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...

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

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

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

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

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

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

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

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

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

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

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

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!!

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!!

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!!

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!

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

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!

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!!

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

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

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

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

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...

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!!

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!!

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

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!

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

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!

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

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.