Neonatal Graves...what we have learned

Well since the twins were born I have learned alot more about this disease. I thought I knew alot when our 3 year old had it, but I was wrong. Ava has Craniosynostosis, and hydrocephalus, which is actually due to her having Neonatal Graves. We also have found out that she is developmentally delayed. Ava and Ella both are very small, but Ava more so than Ella. Ava has what they called growth retardation, which is also related to the NG. Not only is that related, but so is the fact that she has a different type of shape to her face than the other children. It's almost like this disease just makes it's on little children. It shapes there face, there head, and there size. Makes you wonder what more this disease can do to her, and her sisters.
Ava and Ella as well as there sister Faith all have REALLY LARGE EYES. They look suprised or something. Everyone seems to notice them, but they don't know that it's the disease that caused them to look that way. So they think they are saying something nice, but they really don't know that they are making me feel kinda bad, reminding me that they were born with a disease that I gave them. Yeah I know I shouldn't feel that way, but I think it would be better if I didn't know I was the one that caused this disease. I mean if I didn't have it, they wouldn't have it. How hard it must be to give a child something like a disease, and know that your the one that gives it to them. I know other people on this site know just how that feels. It kinda sucks though when it is brought up almost every time some looks at my children.
Oh man Ava started to push her little walking toy, and walk behind it! How great. She really liked it, it won't be long now before she is up and walking all by herself. How great. I have really high hopes for her. Ella has been walking for sometime, but she doesn't have as many problems from the NG than Ava. Faith doesn't either, but we have found that all three girls seem to have a mild speech delay. We work with them all the time, but it seems to not come. I know Faith who is three didn't really speak much until she was almost 3, she only could say about 5 words two months before she turned 3. Now she is almost 4 and can say about 500-800 or so! It's like it just clicked one day. Maybe that will be the way Ava and Ella are.
Well Ava is still waiting for her appointment for her surgery..........that will come this coming week. I hope anyone who reads this will keep her in there prayers as I know that she is going to need them. I better get to bed, it has been a very long day.
Valarie