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.

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.

Sorry I haven't written in a while. Camielle is starting to eat snacks that desolve quick in her mouth. But she has to use her hand to push the food to the back of her mouth to her little tongue and help it go down. So she is now swallowing a little. Which is great except she wants to eat all the time. When she stayed with me all she wanted was her snacks I had to bargain with her that if she left me tube feed her I would give her snacks afterwards. She has not grown much. I talked with Shely today they were on there way home from CHOP (Childrens Hospital of Philadelphia) Getting a test to check on her growth hormons. They also put her on thyroid pills for her thyroid. I get fustrated with my daughter sometimes. At times I don't think she puts her foot down when it comes to the medical profession. But last week I was proud of her stepping up. She took Camielle to the feeding clinic in Hershey and the lady there told her that Camille is under weight for her age and she should up her feeding. And Shely stepped in and said she won't. That if the women looked Camielle didn't grow from last year and that everytime you try to feed her more she just spits it up. So the lady then checked her records and they put her on a higher calorie formula.

I do worry because everytime I see my G.G. (Grammy's Girl) she seem to be loosing muscle tone. She is so light to pick up.

And I I remember She also has Russell Silver Dwartism. She is going to have to be tough and fight hard. This world is cruel.

On the bright side she finally got her walker. And now that Chloe is starting to walk maybe this will give her the desire to try harder to get around.

I really do miss her and wish I was around her more.