Hope can mean a lot, can change your perspective on a lot of things. As I’ve said, we know we’re nowhere near out of the woods yet, but we have a much more positive attitude towards things, simply because Armand is getting HELP. Just a few months ago, everything seemed dark and we were helpless.
He started the first quarter of his medication this week, taking Ibuprofen 3 times a day. My mom used to say Motrin was a wonder drug, I guess she was right! He usually isn’t great with medicines, but he seems to be taking well to this. And he does do well getting into a pattern once he figures it out (his braces, his hearing aids, therapy, etc.).
Lindy’s mom is in town to see the little Bubble, so I haven’t spent a lot of time with him, but I did spend the day with him yesterday. He was all smiles and laughter. Maybe he just missed me, or maybe he can detect something in us that says “everything is going to be alright”.
I had to hug him a little tighter this morning. I was recently contacted by a group trying to help another little boy with the more severe form of GM1 who lives in Australia. Due to the scarce nature of the disorder, the doctor’s don’t know what to do and aren’t fighting for his life very hard. I’m trying to help in any way I can with information, share what I’ve learned in these past few months and hope that someone there can help. Looking back, despite the fear and trials we’ve been there so far, we’ve been overwhelmingly lucky that we live close to a hospital like Children’s in Cincinnati, that Dr. Collins was so pro-active with Armand, that so many people have reached out to help in some way or another.