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!

Alayna's 1st Trip To The Smokey Mountains!

This was the beautiful view out of our cabin. It was truly majestic! And this is why they are called the Smokey Mountains.
Here is a picture of the cabin my entire family rented for the week. It was way on top of the mountain with a gorgeous view. Here is a view of the great room. The cabin was called the Pine Cone Lodge and was decorated just beautifully. This cabin can sleep 14 people, has 4 bedrooms, 4 and 1/2 bathrooms, fire pit, outdoor fire place and hot tub, and many other amenities. It was a great experience!

Dana enjoying some Alayna time at the "old family swimming hole."
Alayna sits with mommy in the mountain water. The temperature was so nice..not too cold like it normally is!
Alayna and Ava play together in the water. And Douglas nicely shared his trucks!
Alayna taking a nap while listening to the rushing, roar of the mountain water. It is so relaxing.

What a sweet face!
So tired!
A new milestone! Alayna can finally grab the middle toy and pull it down herself! Yeah Alayna!!
Douglas and Drake pose with the kitten that showed up at our house just yesterday! They want to keep her. We'll see!!

We have been busy, busy, busy around here. On July 11th, we left for Pigeon Forge, Tennessee to spend a week in a cabin in the Smokey Mountains. While we were there got to visit the "swimming hole" as we call it, go to Splash Country and Dollywood, ride go-carts, shop at the outlet mall, make a fire in the firepit and fireplace and roast hot dogs and make smores, and visit with relatives. We had a great time and we thank Grandma and Grandpa Bush for taking us. We will have great memories to talk about for a very long time.

We arrived back home on Friday, July 18th and on Monday, July 21st at 5:30 am we had a big storm come through that knocked the power out until Thursday, July 24th at 10:00 pm. So, that is why I am now just getting around to a new post. Dana was out of town working in St. Louis and I am so thankful that I live next door to my in-law's. My father-in-law, Rich, had the generator hooked up Monday morning in no time and we had power. Unfortunately, we had his generator and we get our water by well and they have the pump. I did decide to haul all 4 kids over to a hotel in Muscatine Monday night so we could all take baths. It is amazing how much our lives evolve around water. But by Tuesday morning, he had got another generator and we had water! So it all worked out okay. It was a very rough week for many of our neighboring communities around here. Lots of damage due to high winds....some were clocked at 95 mph. And there is still tons of clean up to do. We pray for them.

Alayna continues to progess at her own pace. She did a new thing the other night! She can now grab the middle toy on her sounds-n-lights gym and pull it down on her own. It vibrates when it retracts back up and she smiles. Yeah Alayna! She is getting some muscles. I don't have too much to report therapy wise because she missed the week we were in TN and she missed last Monday due to the storm. Now this week she has therapy 3 times, so I'll let you know if any progress starts on the stander and braces.

This week Alayna has come down with a summer cold and has been feeling under the weather. She just isn't herself. So say a little prayer for her in hopes that this is all it is. I don't think it is anything major, but we may be visiting the pediatrician Monday just to make sure. I imagine that the vacation took a little toll on her routine in addition to the power outage and not having the AC running. I really notice a difference in all of my kids breathing when the windows are open versus the AC.

I will try to post again soon. We continue to enjoy our summer vacation. It is winding down and school begins for me August 19th. It is stressful sometimes to be home all day with my 4 kids, but I do enjoy it. I love teaching, but I'm not looking forward to the juggling act of doing both. But that is the reality of life isn't it?!

A Happier Alayna & A Tribute to the Rocket Fire 10U!

Coach (Dad) Dana and Alexis pose after receiving the victorious hardware!!
I am so proud of Alexis, her team, and her coaches for a job well done! Congrats champs!
The 1st Place State Championship Team for ASA 10U - Go Rocket Fire!

Alayna is moving around the living room more - rolling and rolling and more rolling!
Alayna enjoying a piece of watermelon.
Alayna's first bite down into the watermelon! OH!
Alayna at the state tournament. Again, this swing has been a life-saver.
Grandma Billie feeding Alayna in the shade at the state tournament.

I have a few updates to fill you in on regarding Alayna. First, she has been in such a better mood lately. Her bottom, last 2 teeth have finally popped completely through and she is handling therapy much better. It is so nice to have our smiley, happy Alayna back. The last month had been a rough one. Her PT from CTC has just begun discussing the possibility of Alayna getting a supine stander to help get her bearing some weight on her legs. She just doesn't tolerate standing at all. Even though she is far off from walking, this would hopefully get her used to standing. I can't wait until she uses her legs!! And we have also begun discussing the possibility of getting her some AFO's braces to support her ankles and put her in the proper standing position. Again, all of this is new to me and in the preliminary stages, so I will keep you posted.

Here is a link to see what a stander looks like. Now obviously Alayna's would be smaller, but they adjust. They look so "medical" and I hate that. http://www.rifton.com/products/standing/supinestanders/index.html

Here is a link to see what AFO's braces can look like:

http://www.pediatric-orthopedics.com/Topics/Walking_AFOs/AFO/afo.html

I am also in the beginning stages of trying to find Alayna a new bath seat or chair. Eventually she will need something a little bigger than a baby bath tub that provides her enough support so that she enjoys having a bath and I can easily wash her curly hair. Oh, and at the same time keep water out of her tubes. Right now, the baby tub is fine, but it is something to think about. Who knows, maybe she'll surprise us and be able to sit in the tub ring I used for the other kids soon!

Over July 4th, we headed to Springfield, Illinois because our oldest daughter, Alexis, competed in the Illinois ASA state softball tournament. Her team, the Rocket Fire 10U, won the state championship and it was exciting! They all worked so hard and we are all so proud of every one of them. So, a few of the pictures above are a tiny tribute to Alexis and her team members. Alayna was great the entire time and loved the swing. Okay, two of the nights she woke up at 4am for a bottle, but that was okay. She went back to sleep. I had a lot of support and help from other parents and I wanted to say thanks to them too. Tammy helped me carry stuff to the car everyday with Alayna and Douglas and load them up and I couldn't have done that without her. Ken and especially Logan, thanks for tolerating Douglas and entertaining him. Again, thanks everyone because I had a blast and was so happy to be there with all of you!

Upcoming appointments in the next month are visits to the pediatrician for her 18-month check-up, to the Developmental Pediatrician, Dr. Morgan, in Peoria, and to the Department of Otolaryngology in Iowa City for a hearing test and tube check. I'll keep you posted on those as well. I'm working on getting her an Iowa City vision doctor and geneticist, so those are future appointments.

Sorry for such a short post, but not too much happening. We are just trying to relax when we can and enjoy the summer because it is flying by.

Alayna, Our Little Ray of Sunshine!

A gorgeous rainbow popped up right outside our house one recent afternoon. I couldn't resist taking a picture. Everyone wonders about rainbows and usually stops to awe at their beauty and uniqueness. They are rare and not found all of the time. Kind of like Alayna - one in a million and full of beauty! She's our little ray of sunshine.
Can you believe that we had to wait close to 5 months to get her to smile for the first time? Now she smiles tons and it will brighten anyone's day. She just has this toothy grin and bright eyes that look at you so innocently.
Smiling up at big sister Alexis.
Here is a major problem that I have a feeling we will battle for quite awhile. Yes, her hands are constantly in her mouth! She is teething, but it has been shared by other 1p36 parents that sometimes it gets worse. Maybe a little Tabasco sauce would do the trick! Just kidding.

Yes, I am completely over the helmet. We've had it in the family now for a little over 5 months. I'm ready to see it go! But we are still waiting on one particular spot on the back of her head to pop out someday. Believe me, I check it every single morning. I continue to clean the helmet each night with soapy water and sometimes rubbing alcohol, but it is taking on an odor of its own and I can't seem to do anything to get it away. Plus, summertime doesn't make it any easier because she sweats in it so much.
She continues to be such a good sport wearing it though. But she enjoys pulling at her hair when it is off. I think she does this just because she can! One benefit of having the helmet on during our therapy sessions at home is that I can easily grab the back of it and pull her head up.
More hand in the mouth and more swinging. She is absolutely addicted to movement.
Often times throughout the day or night, especially after she has eaten, I still put her in the infant carrier. Mostly to keep her upright and to reduce the chance of spitting up.
Now this picture was taken right after the above one and at the same angle. See how she has the carrier rocking? She loves to kick her legs and get it rocking as fast as she can. It's so funny and she smiles the entire time. One day when she is able to swing on an actual swing set she is going to be one heck of a "pumper" with those legs!

More time in the swing and more hands in the mouth! She is beginning to arch her back and try to sit up in the baby swing like in this picture. I wonder how much longer she'll be safe in it? We keep a close eye on her and I know the day is coming when we will have to put it away. (I'm crying)
A cutie in one of my big sister Alexis's old outfits. Bins of clothes around here are so handy.
Here is a picture of what she does to her hands. She has a tiny callous on one of them from all of the sucking she does. Thankfully right now the only time I've seen her bite her hands is when she is frustrated and that is usually at therapy.

Glad to be back everyone! I'm on summer vacation and honestly I have been too lazy to do any blogging. You know I truly feel that I get more done and I'm much more organized when I have to work during the actual school year. In the summer time I tend to "shut down" so to speak knowing that I really don't have any deadlines to meet. It's been very busy around here lately and I'll try to update you on some things happen with little Miss Alayna.

Portable Swing

One of my teacher friends loaned me a portable swing to take to ball games. I thought what can it hurt. I'm willing to try just about anything to get Alayna comfortable enough that I might actually be able to enjoy a game. We took it to Lexi's ball games about 2 weeks ago and it was heaven! She loved swinging (of course), the toys to play with, and the sounds and lights. She was an angel. Instead of normally fighting her sleep during nap time, she fell asleep quickly and easily and I got to watch the games. We've taken it to every ball game since. Thank you Nikki! It is a lifesaver.

Speech Therapy

We had our second try at speech therapy last week. She did pretty good tolerating it for about 20 minutes and then completely shut down on us. But I did get some great advice from the SLP (speech language pathologist) to begin to try on Alayna. Since then I've bought her a new Hello Kitty electric toothbrush to try to get her to allow me to put it in her mouth and brush her teeth. This will not only stimulate her mouth, gums, sides of her mouth, but she may also like the vibration feeling. Right now she tends to put her lips together as tight as she can and not allow me to put it in. However, once I get her to open up she does much better. I was also given a rubber NUK brush to use to stimulate her tongue and sides of her mouth so that hopefully she'll learn the "boundaries" of each one. They have to realize that their tongue is a separate thing and can move from side to side. This helps transition to eating more solid foods and plays a big role in chewing. Wow! These are definitely things I just thought naturally occurred. This is tough work for Alayna and it boggles my mind!

Vocalizing

Alayna has been more vocal again for the past few days. She goes through spurts of this. I just love hearing what her voice may possibly sound like in the future. I love that brief moment where I think she is trying to chime in the conversation and tell us something. It is priceless. Most of the time she is all smiles, but no sound. So as you can expect this type of "cooing" melts my heart and I freeze and watch her every single time. It gives me great joy to see her make a sound and actually move her tongue. Today in therapy her PT and I kept saying "mom-mom" and I swear she said it. Her PT and I looked at each other and we were thinking the same thing. Her PT really enjoyed hearing her voice today too!

Occupational and Physical Therapy

Since therapy has been cut back to 40 minute sessions instead of 80 minute sessions, it has been going much better. 40 minutes is about her limit right now before she starts to completely shut down. Today we had PT and on the ride over I had to pull over twice to replace the infamous pacifier. She cried nearly the entire ride. I thought oh great, this is going to be another wonderful therapy session. At that point I wanted to throw in the towel, but that would be the easy way out and Alayna would love that too. And that gets nothing accomplished. So, I let her take about a 10 minute snooze in the van and took her in to PT. As soon as the sound and lights toy was turned on she instantly perked up and away she went! Therapy went so smooth and I was so proud of her. So was her PT! Good job Alayna.

Both OT and PT set new goals for Alayna at Comprehensive Rehab this week. We are working on so many things that it is nearly impossible to write all of them in the blog and you actually know what I'm talking about. But here are a few things we are focusing on: trunk rotation and looking side to side, sitting, getting on all fours, laying sideways, going from a sideways position to sitting, stretching her hamstrings, joint compressions, ankle stretching, "righting" position (keep herself upright in the proper position without falling to the side or backwards), reaching for toys, cause and effect, and the list goes on and on. It literally could be my full time job because we could do something every minute of the day.

Feeding

We had a very exciting moment two days ago. I decided to try a Stage 3 baby food with Alayna to see what she would do. It has more pieces of food in it or I guess you could say it is chunky. I gave her the first bite and figured she'd gag on it. So I was ready with the paper towel. But she didn't and actually loved it. She ate her first bites of macaroni and cheese with carrots. Yeah! And then I gave her the sippy cup, which I try and make a habit of at dinner time, and helped her get it in her hands and hold it up. She normally sucks it out and then spits it or just lets it run out the corners of her mouth. But not today! She sucked it and swallowed it continuously without spilling it out. I was amazed and her big brother Drake was so proud of her. He witnessed it with me. We clapped and cheered and of course Alayna eats up all the attention.

More 1p36 Family

I've added some more links to the right hand side of the blog. We've had some new members join our Yahoo support group and they have blogs they share. So, check them out if you get time. They too experience very similar things as we do with Alayna. And you will see how many of the kids have the same characteristics. Again, I can't say enough about the support I get online with these families. They provide me with a wealth of knowledge that is right at my fingertips and I'm so grateful.

Developmental Therapy

Developmental therapy continues 3 times a month through Early Intervention. She comes to our home and works with Alayna. Tomorrow is the first time that I will actually witness it since school is now out. I will update you on how it goes later, but I'm hopeful that Alayna enjoys it because after all she loves to play and loves toys.

Alayna continues to teach me new things every day. She really is our ray of sunshine. We love her so much and enjoy watching her grow and develop each day. She is getting stronger and much more mobile and I just have this feeling that one day very soon she is going to sit up and things are going to really take off!