Rhea
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well, I guess it's maybe time to update on my grandson, Ethan. He's now 7 months old, and 3 days ago was dx with infantile spasms (West's syndrome). We are devastated, needless to say. The hardest thing, (well, not the hardest) is that my first daughter died from this. Lightning struck twice, and no one knows how or why. We thought we knew why my daughter was handicapped, and after all these years, find out that it was wrong. I know what is ahead for him. My heart grieves for my daughter and him. I've seen this movie before-- and it NEVER ends well. I don't know where to go from here. To see him spasm, and remember what it was like to hold my own when she did, sometimes I don't know how I will be able to do it. But, I have to. I watch him while his mama works, so I see him a lot. She just put in for 30 day leave, so she will be home to start therapy and stuff. hOW COULD THIS HAPPEN TWICE IN THE SAME FAMILY?? I just don't understand. I love the little guy so much, and I see him already losing his personality very fast. He hardly smiles, cries a lot, has trouble eating, already. All he can do is seizure, sleep, maybe eat- then it starts all over again. He is now having seizures in his sleep. I know no one has answers, but I just needed to say all this. I guess I'm just trying to come to grips with it. As much as we can.... :giveup: :sad:
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