Hi, This is Rachel, I am Micah's Mom. He is now about 16 months old.
I was glad to hear about Denis getting a new chair and the brace.
Micah is getting what they call a flexible TLSO, I guess it is a
torso support to help him not get scoliosis. I was wondering how many
of our children have these and if you have seen them actually help. I
have also been wondering about wheel chairs and what is the best
support for your children. My Physical therapist was also wondering
how you all deal with the floppy head syndrom and what helps to keep
them upright. We also just bought a new carseat for Micah thinking
that it would work good for him but because his head is so floppy it
does not seem to be working out that well. The chair does recline
some, but it has this weird head peice that makes it actually harder
for Micah to sit right then well. frusterating! We also just
purchased a double stroller because we were wondering how we would
take our children (I am due to have our next anytime) out and about
and making Micah as comfortable as possible. Do you all have special
vehicles to help get your children in and out, with extra room?
Welcome to the group Alison! I have seen Niamah's pictures on Harry's
site for so long I wondered if you would be able to join the group
sometime!
I had one more wonder comment, and that was I was thinking about our
children and have any of the rest of you noticed how their eye
lashes, cheeks, noses and lips seem to be the same, or kind of the
same? I keep looking at these babies and I think they all look like
our Micah, and because we know soooo very much about this disorder I
wondered if there was any kind of "look" that was similar, or if I
was just dreaming it up.
Anyway, Micah has been super sleep these days and we have had quite a
time getting his medication regulated so that he has waking times....
eating and gaining weight have been hard, yet he gained 5 oz!
Hurrah
Thanks blessings to all,
Rachel
Sturgis Michigan USA