Lots of New Happenings!

Here is Alayna in her new rear-facing big girl car seat. She doesn't mind it at all!
Here is Daddy and Alayna ready for bed...both asleep on the couch. Can Alayna breathe?LOL!


I've changed the intro song on Alayna's blog. Thanks Michelle for passing it on to me. I've heard this song many, many times on the radio or wherever, but I've never quite listened to the words. It is a message that hits close to home. So listen as you read. Music is a neat way to express thoughts and feelings. Feel free to pass on other songs if you hear one that seems to "say it all."

It has been another very busy week here in the DeKeyrel household. As you can see from the above photo, we never get enough sleep and I didn't have time to take many new photos to share. Sorry, but I'll try to take more this week.

I have some updates I'd like to share with all of you. First, Alayna is now officially riding in a big girl car seat. We said goodbye to the infant carrier about 2 weeks ago. We do still use the carrier at home to prop her up every now and then because it is so convenient. Using the big car seat has been an adjustment for me and Patti the most so far. We are the one's carrying Alayna the most and taking her in and out of the car, to therapy, or to wherever else the other kids need to go. The challenging part of it is that Alayna isn't a typical kid to carry. Since she lacks strength in her core muscles she doesn't provide us much help. She gets floppy sometimes and she throws her head back and she just moves everywhere. Don't get me wrong, she is getting much better!!! I've seen a huge difference in the past month, but it is still hard at times. For longer visits somewhere we resort to using the umbrella stroller.

Therapy is going awesome. We are so thankful for Comprehensive Rehab to be in Muscatine. Not only is it close, but they work her hard! I love hearing that because she is progressing so well. Her OT and PT are happy with how she is doing and are really focusing on the sitting. And one thing I have to remind people of is when they hold Alayna, don't hold her like a baby. It is so easy to just cuddle and swaddle her, but we need to make her work and sit and hold her head up. Right now we are also working on her kneeling and use a "peanut" for balance or I just use my leg. Last week Alayna sat for 29 seconds! That is a long time if you think about it. I hope we can get a sitting picture at a studio soon. We are also working on putting Alayna on to her side and doing "elbow" time. She doesn't enjoy it too much, but does better if she has a musical,light up toy to watch. The "sounds and lights" toy is a lifesaver when it comes to therapy and getting her to stop fussing and stay focused. She loves it! Comprehensive Rehab has one and we have one here at home. It really helps to get her to look up and hold her head up. Alayna continues to roll from back to tummy and tummy to back. Occasionally, she still has a hard time when her arm gets stuck underneath of her. I do think that when her helmet comes off she will do much better. It's a distraction and it's cumbersome. The developmental therapist will be coming soon to show us more techniques for play time. We are working on a good time in the day for that appointment. It's tough squeezing all of the therapy into limited hours.

Alayna is eating well, but I sure do wish she' d try "table" food like crackers and bananas. Texture is definitely a big issue right now as well as realizing how to move food to the back of her mouth to swallow it. Most of the time she just gags on it. Even if it is the smallest piece of something. We'll keep trying! I've given her a banana and a cracker in a mesh bag feeder, but I have to hold it. She did pretty well though, so that is a start. Alayna still enjoys baby food and her bottles, so we'll stick with all of that for now. I have to remind myself to be patient for everything.

Alayna seems to be starting to use her tongue more to make sounds. It's been kind of a hit and miss thing. Most of her sounds so far have been what I call "internal" sounds where no air comes out. I really think that some of these new sounds she has been making are something we can eventually work with! Yeah. I keep doing signs with her like mom, dad, more, and eat. I don't think she understands any of them, but when I sign "mom-mom" she either smiles or laughs. I'll keep doing them. Repetition is the key and eventually it will "click" someday.

Something we are beginning to see is how much Alayna puts her hands and fingers in her mouth. I know she is cutting teeth. It's obvious by looking in her mouth and seeing all of them coming in at the same time. But she will put her hands in her mouth upon frustration too. She prefers to suck on the part between her thumb and index finger. We are trying hard to either divert her attention to something else, put in the pacifier instead, or just pull her hands away. She has made a small callous on one of her index fingers and has a bite mark on her thumb. Many of the 1p36 parents informed us of this challenge at the Florida conference last November. Their advice was to just stay on top of it and hopefully they will overcome it. Oh, another thing I do is pull her sleeve down over hand because most of the time she can't figure out how to uncover her fingers. At least it is a barrier.

Our 1p36 support group on Yahoo has been growing with new members. Over the past few weeks, we've had many new members because of more children getting a diagnosis. Some of the children are under a year old, but some are 2-3 years old or older. Dr. Shaffer's efforts are paying off. The medical technology is there and it is the answer to many parents questions. One family in particular is from Normal, Illinois. They too have 4 children and their youngest is 3 years old and has been diagnosed with 1p36. They are so close to us and I really hope we can meet each other someday soon. Dana and I both graduated from Illinois State University, so we are way too familiar with that area. I know we'll be in that area this summer for Lexi's softball, so I'll make every effort to try and get together with them. Our support group is so valuable to us that it is hard to express that in words. And I appreciate those members who check Alayna's blog and for their encouraging messages.

Alayna continues to be so cuddly. She enjoys being held and I enjoy holding her. I look forward to the day where she reaches out to me when I go to grab her and I look forward to the day she hugs me back. Okay, and I can't wait until she can give me a big kiss too. We continue to enjoy our little angel. Learning is an ongoing process for everyone no matter what the situation. Alayna continues to play a big role in our families learning. Keep checking the blog for updates and thank you to those who always leave us a message. We read all of them!!