Her STARband Orthoses Has Arrived!

"This isn't going to keep me from moving around and rolling onto my tummy!"
"I'm not sure what and why this thing is on my head?" Visit http://www.orthoamerica.com/ and link to STARband Cranial Remolding Orthoses to read more about it.

I wanted you to see what the STARband looks like. I'm not trying to be cruel to Alayna!
Each side has a cut out for her ear. It does shift a lot because it has gaps where her head should grow and form into. This is the velcro strap that holds it on. There is a small piece of styrofoam in between the two pieces to make sure it isn't over-tightened.


"See my tongue!" Alayna has begun to stick her tongue out and sometimes on command. Patti, her sitter, has been working with her and she performed this new trick when I picked her up today! Yeah!!
Of course she is so sweet and her smile is adorable.

Well, it has been another adventurous week and Alayna continues to educate everyone she meets. It is amazing how interested some people become when they meet her. And at this time, I'm glad to share Alayna's history and story for her. Someday, she'll be able to talk and tell it herself. I truly believe that. I admit it is really tough sometimes. Last week I had a day where it seemed a black cloud was following me and I questioned God for making his choice in picking me as her mom. But, when these times come around, I find the most strength in my faith and in Alayna and we keep rolling right along. Here are a few "glimpses" of Alayna's week. I hope you enjoy!


ALAYNA IS NOW ROLLING FROM HER BACK TO HER TUMMY!!!! This is a major milestone for her and we couldn't be happier. If you put her on her back, she isn't there for long. It is only the beginning stages of mobility, but that is a huge accomplishment. Mobility is something that just doesn't come too easily for 1p36 children. We'll take any kind we can get! Alayna still needs to learn how to roll back over and how to get her head and neck off of the ground more. All of that takes upper body and arm strength and that is also continuing to develop. She'll get there!


ALAYNA IS HOLDING HER RATTLE AND PLAYING WITH TOYS!! Until recently, Alayna hasn't really shown much of an interest in toys. However, now she will hold her rattle and rings for quite awhile and hold them up and look at them. Yes, unfortunately she still beats herself in the head with her rattle, but that's where the STARband will come in handy!


ALAYNA GOT HER STARband HELMET TONIGHT!! I'm excited, but I don't think she is as excited as me. Well, I guess "excited" may be a bit of an overstatement. But compared to everything else we've been through with Alayna, putting a helmet on her for a few months is minor. Dana and I are completely committed to keeping her on the schedule and hope she can stop wearing it by May. I look forward to her having a nice round head someday. She has what is called positional plagiocephaly. In fact, I may have to join another Yahoo support group for kids with exactly this. It is one of the largest support groups for children on the Yahoo site with nearly 4,000 members. Can you believe that? It is more of a common thing than I realized. And it isn't occurring with just special needs kids. It affects normal kids just as often. It's not the most stylish thing to wear, but I'm sure Alexis will have an idea to decorate it with stickers soon. Maybe we'll just decorate it with stickers for the current holiday! She'll be wearing it 23 hours a day by Tuesday. I'll keep you posted with how it progresses.


ALAYNA IS GETTING TUBES IN HER EARS TOMORROW AND AN ABR HEARING TEST!! I'm not too excited about this because she has to be put under with gas. But she has done it once before. I'm saying my prayers that the tubes will help prevent more ear infections and that she has good hearing. We have to be in Iowa City tomorrow morning by 6:00 am. UGH! She is the youngest patient tomorrow, so she goes first. That will actually be a good thing so we can hopefully maintain her eating schedule. I'll let you know how this goes too. Say a prayer and wish her luck.