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.

6 months

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!

... 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

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

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!

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

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!

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

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

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

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

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...

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!

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

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

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

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!!!

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.