Hi. New Here.

iVillage Member
Registered: 11-08-2005
Hi. New Here.
Tue, 04-04-2006 - 5:59am
I have a son who is going to turn a year old in May. He was diagnosed with Menkes disease in November, and it's been a roller coaster ride since then. He is doing great, he has severe developmental delays, but has been responding a lot to music lately, and has been looking at me, so things have been looking up. He suffers from constant seizures, but even they are under control. He still has them every day, but they don't bother him as much, and he's even been smiling while he has them. In the last week or so I've realized that despite all the obstacles, if he can still smile then I can too, and it took a long time for me to realize that. He had a stroke when he was younger, and didn't smile for two months, and I think, if he could overcome that, then why shouldn't I be able to overcome it too? I also went through a time when I couldn't go out, even to the store, because any time I saw a little boy past about three years old (most kids with the disease pass away before their third bday), I would burst into tears. Anyway, I'm trying to remain optimistic, since I have met online other parents with the disease whose children are five or older, so there's hope. I saw this board and thought I'd write, because even though the conditions may be different, it seems like a lot of the special needs our children have are similar, and it has really helped reading through the posts. Now that he's almost a year old, I've been looking at other options for a stroller. Are jogger strollers a good option? I saw one at the store and almost bought it, it said it can hold a child up to five years old, and has a reclining seat. My only concern is he doesn't have any head control, and there's not an attachment or anything to keep his head in place. I'm thinking of making one. Has this worked for anybody? The difference in price between this and anything else is huge, the jogger stroller is only $99.
iVillage Member
Registered: 03-19-2003
In reply to: sethsma05
Tue, 04-04-2006 - 11:18am

Hi Michelle, welcome to the board!