Pictures and Info To Share!

This is sort of how Alayna's stander may look. It is a Squiggles Stander by Leckey.

We continue practicing how to sit up! She is doing quite well, but still loves to have her fingers in her mouth.
She still loves her bath and as you can see has fingers in her mouth again!
All smiles...for now anyways...she has been a bit on the crabby side lately (?)
It surprised me the other night when I was dressing Alayna and turned my back for just a second and she had found her comb on the bed and picked it up! She was checking it out and trying to put that in her mouth too!

Computer Issues At Home

I still can't get my computer to work at home. It isn't reading anything we put in it. So I had to resort doing this at work. And yes, I did do this after school time. So, this is going to be a short overview of yesterday's appointment with Trinity and the CTC.

Stander and Kid Kart Update

Yesterday, Alayna was measured and put in a Squiggles Stander made by Leckey. The rep brought one and we gave it a try. Alayna fit in it quite well and it has special features for her that made us go with this one instead of a Rifton. It comes in pink, so I'm happy and it is easily transportable which also makes me happy. This will go back and forth from our house to Patti's or Grandpa's during the day. Alayna also was measured for the Kid Kart Tlc which is bigger than the Kid Kart Express and will allow for longer use and growth. Each item is very costly to say the least and each one has "features" that are extras. Each additional "extra" has a code and a cost. It is amazing how fast things add up. It was estimated that the stander would be $3,000-$4,000 and the Kid Kart would be $2,000-$3,000. So, we are waiting for the rep to run both of these through our insurance and we'll just see what happens. Please say a prayer that both get approved and that the insurance is willing to cover ALL (okay, if not most) of the cost. Alayna needs both of them to help her development.

Developmental Pediatrician Visit & Other "BIG" Things To Share

Photo of the Kid Kart

Developmental Pediatrician Visit

Last Monday, Dana and I took Alayna to Peoria to visit Dr. Morgan, Alayna's very important developmental pediatrician. The last time we had seen him was in January this year. His role is to access where Alayna is developmentally and guide us to the appropriate interventions and make sure we are doing all we can to get Alayna to her fullest potential. These kind of appointments tend to bring out an entirely different realm of emotions for both Dana and myself. It's unlike going to get her ears cleaned out or to the pediatrician for shots. It is a major reality check and Dr. Morgan says things like they really are. Let's me just say that he doesn't hold back much. It is hard for our ears to hear sometimes and it takes us out of our "safe bubble." But the great thing is that Alayna continues to make strides and improvements all over the board. And Dr. Morgan stressed that each of these milestones will be huge celebrations in our home and he is so right.

Dr. Morgan thought that Alayna's therapy agenda looked pretty good, but reiterated the fact that what we continue to do at home with her is what makes all the difference. He did have two main recommendations for us to consider. They were to get a stander and to think of a means of mobility for Alayna. A stander's purpose would be to help Alayna learn how to bear weight in her legs and just get the feeling of what it is supposed to be like standing up. Doesn't that sound odd? When I really think about what that means I say "Wow" every time. It is a task my other children just did and I never thought about how much "hard-wiring" it takes for our brain to help our muscles do this. I hear very positive feedback from my support group on how they provide so many benefits. A stander will also give Alayna a different perspective of the world around her. Right now she sees a lot of things sideways because she still lays down and rolls on the ground a majority of the time. That has got to be getting old! Kim, Alayna's PT at the CTC, had previously made this recommendation, so it is reassuring to know that she and Dr. Morgan are thinking the same thing.

The second recommendation for us to consider was getting a means of mobility for Alayna. Honestly, this one took us both by surprise and we were a bit hesitant at first. We use a typical stroller most of the time and it works, so why do we need something different? Alayna is only 20 pounds and fits in all standard strollers. It did get me thinking though because I can't say with confidence that Alayna loves her stroller. Well, there are some benefits to purchasing a Kid Kart that we hadn't really thought about like allowing Alayna to sit up higher and be at the level she'd normally see, be pulled up to a table, and be forced to sit up more properly. Many of our support group parents have also said nothing but wonderful things about the Kid Kart and they say it provides "therapy" every time you put the child in it. And even though it is at least 2 years down the road, it could be a means of mobility if Alayna had to ride the school bus or if she had to use it in the classroom. Honestly, Dana and I have high expectations for Alayna and we hope she is walking by that time!

In conclusion, Alayna has therapy at the CTC this Tuesday and a representative from Trinity will be coming to do some measurements on Alayna and we plan on getting both the stander and the Kid Kart. We are excited about the benefits both can provide her. It was recommended to us to purchase both at the same time so that is what we are going to do. And from what I have read, the Kid Kart can be ordered in pink....so I'm happy!

Hip X-ray

While we were in Peoria, Dr. Morgan wanted to get an x-ray of Alayna's hips just to make sure the development was okay. Especially since she isn't putting much weight on her legs. Unfortunately, the x-ray machine that is next door to the Easter Seal's Building where Dr. Morgan is located was down and not working. So, we had to resort going to the hospital (which every time I walk the main corridor it brings back memories from that first night we rushed Alayna down there not knowing what was wrong with her). And of course, we were put in a waiting room and waited and waited and waited. Dana finally found the nurse that escorted us there and come to find out they forgot about us. Go figure! It is so much our luck! So, a 3 minute x-ray took over an hour and a half. CRAZY! Let's just say it was a long day.

Next Follow-Up

We are not scheduled to go visit Dr. Morgan again until 9 months, which will be right at the end of the school year. I hope by that time she literally knocks the socks off of him and his jaw drops to the floor with all that she is doing! That would be awesome.

Sitting and Hand-Biting

I wish all of you could see Alayna sit! She is doing so wonderful I can't express it in words. She is now sitting for minutes at a time, not seconds. She is reaching for toys that are put in front of her and grabbing at them and not falling over. I've seen her put her hands down to the sides to try and stop her from falling. Her tummy muscles are getting much stronger as I can see her pull herself up to remain sitting. Lexi, Drake, and Douglas are loving it because it gives them a whole new perspective of play with Alayna. Douglas is the one who can't stop smiling and giggling at Alayna as she is sitting. You can tell how proud they are of Alayna. I am working on video taping her sit and if I can get my buddy, James, to help me figure out how to download it, I'll get it on ASAP.

Hand-biting has ceased. It is great news. Now, don't get me wrong, Alayna still loves her hands in her mouth, but she is just sucking on her fingers. Her hands are totally healed and she doesn't have the marks and sores like she did a few weeks ago. I hope she continues the progress! We continue to reinforce not to bite at her hands and she is responding.

Camera/Computer Problems

I've got a few new photos of Alayna I'd like to share with all of you, however, I am having technical difficulties that I've never had before. It has something to do with the USB Port and my camera not recognizing each other. I've tried everything I can think of to fix it, but no luck. That means I can't upload my photos to my blog and that makes me angry! I hate when technology doesn't work. I'll keep trying.

I will keep you posted on more Alayna developments and let you know how Tuesday's appointment goes for the equipment.

Our Little Angel Is Back!

Look at that wild hair! Believe it or not, it looks so much like Lexi's hair when it finally started to grow.
Alayna sits really good in the Bumbo seat. She can easily last for 20 minutes, but sometimes even longer. It's so nice.
Here Alayna is reaching for her toy to get it to play music again. She is really coming around and understanding the "cause & effect" to particular toys. Alayna does the best with the ones she is familiar with.

Alayna doesn't really like to lie on her side, but this is such an important skill for her to grasp. It allows her to play with a toy with her free arm and it helps her get into the sitting position.
More practice....I have to take advantage of those moments she is in a good mood and will tolerate it.
Sitting all by herself! Okay, I have to be honest...it is only for seconds at a time...but it is still a great start. She still likes to sacral sit like she is in this picture and not fully extend her postural muscles. And of course, her hand in her mouth is a big distraction.
And then this happens!!! She falls backwards or to the side and doesn't try to stop herself. We continue to work on putting her hands down to the side to catch herself, but it hasn't clicked yet! Still very little defense skills.

Iowa City Visit

On Wednesday, Alayna and I headed to Iowa City to visit Dr. Manaligod in the Department of Otolaryngology. The plan was to do a hearing check in the audio booth and then see the doctor to check on her tubes. Well, I knew the hearing test was probably not going to go good. Why, you ask? Alayna has been crabby for the past month. She hasn't been sleeping well, her therapy sessions are miserable, and she just hasn't been her happy self. I was right. We went in to the hearing booth, sat down in the chair, and she wanted absolutely nothing to do with it. The hearing specialist was on the other side of the glass and tried to get Alayna to look at the speaker that had the sound coming out of it. Alayna wouldn't even open her eyes and cried the entire time. I told them we could try again, that my primary concern was her ears and the tubes.

So, we headed back to see Dr. Manaligod. Alayna's left ear was my big concern because it had some yucky discharge coming out of it. And not to mention that both tubes were clogged at last Friday's pediatrician appointment. A different doctor came in to check out her ear and it needed to be cleaned out. It took two nurses and myself to hold Alayna still enough for the doctor to do what he needed to do. It was like "roto-rooter" for the ears. He used extremely tiny vacuums, kind of like what you would expect to see at a dentist office, to get the job done. This may sound sick, but I couldn't believe the amount of fluid I could hear coming out of her ear. Poor baby cried the entire time and continued to cry after the procedure was over. I literally wanted to pull my own hair out to give myself something to cry about too! Her left ear definitely had an infection in it too. To make a long, stressful story short Alayna was given a prescription for Ciprodex ear drops and set up for another hearing test on September 3rd.


Our Angel Returns

When I say that Alayna's behavior and demeanour did a 180 degree change overnight, I am not kidding! The very next day we had a new kid in our house. She slept through the night (and has ever since that day) and her PT session the next day at Comprehensive Rehab went the best it has for a very, very long time. It was awesome and both of us were smiling all day long. I could not believe it. I'm convinced that her left ear had been bothering her for quite a long time. I'm also beginning to wonder if her severe hand-biting about 2 weeks ago was attributed to her being in some pain. Let's just summarize by saying it is so nice to have sweet Alayna back.

Things We Are REALLY Working On

There are about three things that I am bound and determined to get Alayna to do as soon as possible. After having the "not so pleasant" car ride back from Iowa City, I am being very aggressive about getting her to hold her own bottle. It would've been so nice to just hand her a bottle and allow her to feed herself. She is doing exceptionally well with this new task. The only thing is she drops it every once and awhile and doesn't realize that consequence. It is cute, she really gets proud of herself and likes to have that freedom of doing it herself.

Another thing we continue to work on is holding and drinking from her sippy cup. She is doing much better about not spitting out the juice and swallowing it. I've noticed a huge difference since her ears have been opened up! And lastly, I'd love to see her hold a Zwicker toast stick or a bitter biscuit and eat it. Lots of work to do!!!

Possible Fundraiser/Trivia Night

You know this world has some pretty nice people in it. My mom works with a lady that is willing to head up a fundraiser for Alayna. How nice is that? It is such an overwhelming feeling to know that so many people care about Alayna and want to see her accomplish all that she can. And knowing that this person is willing to take on such a big task to benefit someone she really doesn't even know makes me speechless. I just wanted to put the bug in all of your ears to let you know that if you are interested in helping out Alayna, be planning a trivia table! We are not quite sure of where and when this will be, but I'll keep you all posted. Alayna is in need of a stander and braces right now and her therapy will be an ongoing event throughout her life. So, we would really love to see an "Alayna fund" created for her future needs.


Continued Support

I just wanted to say thank you again for all of your support. I read each and every one of your comments on the blog even though I may not comment back each time. We continue to travel on this journey, and even though it may be tough sometimes, your support and Alayna's smile and laugh make everything seem alright. God Bless you!

18 Month Check Up Report!

My four little monkeys! Douglas is 4 and always smiling for a photo, Drake is 8, charming and sweet, and Alexis is 10 and is huge help to me! And of course, Alayna is 18 months!
Drake didn't want to be in the "group" picture. He wanted one of his own! Now he cooperates and looks at the camera!

18 Month Check Up

Alayna went to see Dr. Neptune, her pediatrician, last Friday. The first task was to get weighed, like usual, and I prayed to see 20 on the scale. And low and behold she is 20 lbs 9 oz! I was thrilled to see that she had gained. No, it isn't much, but she is getting bigger and putting on weight at her own pace. We will take it! And Dr. Neptune had no complaints either. I was curious at to where that weight fell on the "typical" growth chart and it puts Alayna at about the 5th percentile. So, she is on the chart, but I hate to reference that chart too much with Alayna because our 1p36 kids have a development of their own and it isn't fair to compare them with "typical" developing kids. She is 30 inches which is at the 10th percentile and her head circumference falls at the 5th percentile. She's proportional!

There are a few other things I would like to note. First, she has clogged tubes in her ears. She has tiny ear canals, like most of the other 1p36 kids, and that darn wax gets stuck. So, we are trying Ofloxacin drops two times a day in each ear to loosen it up. Alayna goes to Iowa City to get them checked out this Wednesday and it sure would be nice if the doctor could see the tubes. Secondly, I am sick of the helmet. Alayna still wears it pretty faithfully, but she still has this one little spot in the back of her head that dents in. Like Dr. Neptune said though, her brain has to grow and the head has to grow to get that to change. We can put the helmet on her for as long as we want, but that growth needs to occur to get results. I don't know what to do! I'm going to her helmet doctor this Tuesday and see what he advises. I've put it off for so long and it is time to check back in with him on her progress. Also, I asked Dr. Neptune his feelings about Alayna still in a rear-facing car seat. He asked if it bothered her and it doesn't. He said just keep her rear-facing and to not be in a big hurry to turn her around just as long as she has plenty of leg room. Lastly, the only medication that Alayna is taking is myralax in her bottles. I feel so very fortunate that she is healthy and doesn't require any other medications. Overall, the check up went quite well and he was happy with her progress. We continue to be so proud of our little Alayna!


A Full Night of Sleep

I just have to tell you that I miss sleeping through the night. Alayna was doing so well with that and all of a sudden we took a turn about a month ago. She continues to go to bed around 9:00-9:30 pm, however is waking up sometime between 3:00 am and 4:00 am for no apparent reason. Sometime she fusses, but most of the time she just lays in her bed kicking her legs awake. Of course, when she gets tired again she fights her sleep and fusses. It is funny (sometimes) when I hear her trying to put her pacifier back in her mouth. She is not able to do this consistently. She will grab it and click it on her helmet trying to find her mouth. That's when I'm up and down, up and down, until she falls asleep. Or I'm pushing the teddy bear in her bed that plays music and lights up or the wall projector that shows a light show. She still sleeps in the same room as Alexis and it did wake her up last night. I didn't hear Alayna at first, so I better turn up the baby monitor!

I do have to tell you though that on Friday night, the day of her 18 month check up, she slept all through the night! It was marvelous and I felt so good the next morning. Maybe all that being out of the house that day wore her out. She wasn't able to follow her normal routine of cat napping when she wanted. Maybe I need to take Alayna to the shopping mall more often!


Hand Biting

We continue to battle the hand, finger sucking and biting with Alayna. It is a constant battle pulling her hands out of her mouth and offering her something else to chew on like her pacifier or a toy. Of course, she prefers her soft fingers. The only time Alayna bites her hand is if she is in a terribly frustrating moment which usually happens when she is overly tired or at therapy. She has made herself bleed once and has some pretty good sized sores on her hands. UGH...it is frustrating but we are determined to break this behavior.

Other Things In Progress

Next week I will have more to report. Alayna has therapy 3 times and an appointment in Iowa City. I also have on the agenda to call her PT at the CTC and see what the progress is on getting her a stander and braces. Our 1p36 Support group has formed a non-profit organization to raise money and spread awareness. My goal is to have a fundraiser in the near future, maybe a bake sale, to help with this cause. I'll keep you all posted!