Gretchen - posted on 08/28/2009 ( 3 moms have responded )
My name is Gretchen and my son Caleb is 2 and is a twin. He is the only one with a serious seizure disorder, severe development delays and he has a gtube. He has gone through multiple blood work ups, muscle biopsy's, eegs, cts you name it and it seems he has had it done. The top part of his brain never fully grew and that part that is there is put together in a abnormal way. The said he most likely wont be able to walk or talk. I fought so hard to get the few answers that I do have about my son. I see early intervention and thank God for Shriner's Hospital. He is on Keppra, Phenobarb, Topamax and Prevacid. I feel so alone and overwhelmed with very little help. I have to stay at home due to his condition and there father works very hard but it never ends. With all the special equipment that is needed and finding a home that is handicap friendly while still trying to take care of his very active twin sister Isabel. I need any advice and support I can get. I get on this wonderful website everynight and THANK GOD FOR ALL OF YOU! I just struggle to only take things day by day but I am look at those doctors faces and sometimes they look hopeless and I just don't want to put my beautiful boy through any more tests. Any advice or suggestions! Thank you!