Big Acheivement!!

Camielle had a swallow study done today. She did awesome!! She is swallowing really well. They wanted her to do it without using her hand. But her physical therpist told the study tester that it was impossible for her to do be cause of the decline in her jaw and she needs it to help her chew and creat a suction to swallow. They said she has adapted to over come this disability very well. And they were really impressed by what she can do. Does this mean no more feeding tube...No not for awhile but it is a step in the right direction. Grammy new she could do it. Love ya my G.G.

They were up to visit me for a couple of days. I look at her and see how she has matured. Even though she is only 15lb. and soon to be 3 is doing great. I got to see her in action in her walker. She can book and she is not lazy about using now. She stands and uses her legs for support. It is so hard to explain how it makes me feel to see her do these things. And of course I did something I was alway afraid of doing and I let my guard down. I was putting her shirt on her not paying attention and I pulled her mikie button out. She cried and cried. I keep telling her I was sorry. And she would just shake her head yes. Like to tell me It was okay and she understood. She is so forgiving.

My thoughts:

My Little Lady. Your hair is getting so long. I real miss your smile and the things you do to make me laugh. I look at these pictures and I see how intense you are looking at those pictures. Your really growing. It may not be in weight or length. But you are growing up fast. And alot of time I am sad that I am not there to see it. But I do get excited and proud with every new thing you achieve.

I listened the other night as you squeeled with excitement (over the phone) when your were riding you little 4-wheeler. I wish I could of seen the look on your face.

Now about you:

Camille just went to the orthopedics specialist and they say because she hasn't grow any she is to small to do any reconstruction on her hand.

She has a swallowing study next week. And that will help determine if they are going to shave her jaw to allow her more movement. This will allow her to eat on her own orally. Right now she is limited to jaw movement because she has an incline at the back of her jaw. As she gets more teeth that limits the movement of her jaw more. Right now she does eat snack that desolve quickly. She uses her hand to push them to the back of her mouth so she can chew them and swallow.

I am finding more and more this child was given to us for a reason. One being you can't alway tell what a person is like by their looks. No matter what my problem are they could be worse.

And This world we live in is a cruel world. But We can handle it.

Okay, well another change. Camielle does not have Russel Silver Dwarfism. They are still waiting for results from test for her growth hormones. But I will say I have found Facebook (Moebius Syndrome Support Group) to be more helpful then any medical facility or web site. It is nice that Shely can talk with other people who have or have children with moebius. Camielle is getting use to her new walker. She will use her legs a little in walking movements. But she finds it easier to push with both feet. "Lazy"
But other then I can say I am just missing the girls.