- Hi, thanks for all your responses to the motor delay question.
I have hope that Jasper will gain better trunk and head control and
be able to relax enough to sit up (his hips are very tight) and be
comfortable in a carseat or other seat. It is comforting to know that
other people have been through this carseat drama and survived.
Jasper just had a G-tube placed about two weeks ago, he is recovering
well except for slight infection around the stoma, and some
granulation tissue. We are treating them with antibiotics and topical
He seems to be sleeping better at night, but now he hardly ever
nurses and I am getting sad to realize that he seems to be weaning
himself. I wanted to nurse him much longer, but I'm having another
baby in October so that will be a challenge in itself. Does anyone
else have a child with CP and another one so close after, (they will
be 14 months apart) I would love any advice I can get.
We have been doing HBOT with Jasper for a little while now, it is
expensive and a bit of a drive, no fun with a screaming baby, but it
seems to have helped Jasper's vision slightly. We are trying to
raise money to buy a hyperbaric chamber so that there will be one in
the community and we and others can use it without driving so far.
my husband is doing a fundrasing music benefit, little project with
his buddy, they are a two man acoustic band playing the music of U2-
so after U2's lead singer they are calling themselves BONOr (silly)
and they dress up like Bono and Sledge (backup). They are having fun
and will hopefully raise money to buy the chamber. If you want to
check them out look at the website www.bonorrocks.com - there is also
a donations link.... if anyone knows where to get grants for things
like this I would be interested. Hope all your children are doing
well, thanks again for your words of advice and encouragement.
sincerely, Jenna (sweet Jasper's mama)