It has once again been awhile since I blogged about Camielle. She is growing up. She is still doing her growth hermone shots. She is almost the same size as he little sister. She started kindergarten this year. I worry about her and wonder about bulling. Her mother and I were really upset with the school when we received her school pictures. You would think that with kindergartener or her (because because of the deformities of her mouth she is a messy eater) they would of made sure her face was clean. She is doing speech and physical therapy at school. I really our time together these days. With my jobs and her school. Visits are far and few between. All I know is God has bless me with someone as special as her. It funny from to unknow to knowing she is a strong girl.

Wow! It has been awhile since I blogged. Well Camielle is really changing. She is now walking without a walker. She communicating better. It is hard for most to understand but alot of times she gets her point across. She is in preschool. They work alot with a communication board. She loves it. She does not need to be tube feed anymore. She eat good. Her swallowing it not normal but it is good enough for her to eat orally. They didn't remove her feeding tube port because she will be requiring some facial and oral surgeries. Because she can not close her mouth she had some teeth pulled the rotted away even with brushing. My husband and I own a small restaurant and when she comes up she like to be the server. Our regulars love to see her and the progress she has made. And best of all she is potty trained!!! She is still getting her daily growth hormone shots. I can't think of anything else right now. But It is just so great watching how much she has changed in a few months.

Growth Hormone Treatment working.

Camielle has grown a smiggen and gain alittle weight in less then a month. That is so great. It's the small things that excite us.

They will never understand!!

I have come to the conclusion. That my family will never understand the ups and down we (Shely, Charlie, Dave & I) go through with issues we face with Camielle. My neice told me because I worry about how people will treat Camielle that I have an issue with the way she looks. Of course that would apply to anyone who worries about the same things I do when it comes to her. And of cours I flipped out. Then when my sister was telling me about our neice if forming her about what happened. My sister said that I shouldn't of been mad at our neice but my friends who have moebius or kids with moebius who took offence to what my neice said.
So with that I am now learning they must live on a seperate world then I do. Because I have learned that people can say cruel and hurtful things even if they are a kid or an adult.

Growth Hormone Treatment

Shely got all the things she need to start Camielle's Growth Hormone Treatment. Tomorrow they will come in and show her how to give Camielle her daily shots. I told Shely that will interfer with my having her a week at a time. She said she would show me how to give Camielle the shots. I really have to think about this one. Do I want to become the bad guy who hurts her. It comes in an type epipen type of shot. But do they hurt? Grammy doesn't like to hurt her.

Well I always wondered what will school be like for her? I wonder if the other kids will be cruel to her? I wonder if she will end up like the girl who was bullied and couldn't take it any more. These fears are real to me. Then I was on face book read in the "Many faces of Moebius Syndrome" I read Chelsea Thomas story. And I guess I have to face the fact that is will happen. She will be picked on because she is different. Oh hell I was picked on because I was fat. I guess I was hoping. But reality is it will happen and I can't stop it. I just hope since God made her this way, that he also gave her the strength to handle the peoples stares and remarks. I try not to think about these things but it always pops in my head. I walked past her walker the other day when she was here and I popped in my head that I never thought I would have a child or grand child that would need one of them. And then I thought how blessed I am to have her. She has made me realize how much every little part of life is special. Now when I look at Chloe take a step how special that small step is. When she says words how special each work is. But when I hear Camielle try to say a word or even when that Mona Lisa smile of hers comes through how special they are to me. I know she will have a rough road ahead of her. And pray that she will knock down every road block that is thrown in from of her.

Charlie, Shely and girls are up for easter. And Camielle came with her new walker and she can move in it. As I walked by it I thought how I have seen them before but never thought that it would be one of my grand children. It's amazing how little things pop in your head.

Shely said she talked to the doctor about Camielles growth hormon test and her growth hormons are none exsisting. So they are talking about doing a 6month growth hormon treatment. But the big thing will be to get the insurance company to pay for it. I would be 6 months of everyday 1 shot. And then test to see if it helped. But they think because her growth has been stunted for so long it will not help alot. But everything changes from day to day.

Well tomorrow is the Easter Day. All enjoy there day and God Bless.

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.