Diane - posted on 07/08/2009 ( 3 moms have responded )
I have two children with special needs. My 14 yr old daughter has a brain tumor that sits on top of the pituitary gland and she has lots of hormone problems and we found out a few months ago that she has adrenal insufficency. which I'm still trying to figure out how to help her handle it. If anyone has any ideas please let me know.
My son, well doctors say he has antley-bixler syndrome. He has so many different things going on with him. Hes trached and on a vent, g-tube feed and he has limited movement. His whole skeletal shape is different. I remember the doctors saying he wasn't going to make it. That he would even last a year and be brain dead. Well, hes going to be 5 in october and he is so curious. He may have limited mobility but he gets into things if he can get his hands on it. He even pulled out his g-tube last week. Hes a hand full. I have learned so much from my kids and I love them to death but even i get overwhelmed sometimes. I have very few friends and some of my family do not know deal with us. Sometimes I feel alone and nobody really knows what we go through. If there is anyone out there I would love to talk.
Thanks for listening. Sometimes I just need to talk and let things out. And I can be a good listener too.