Hi. Actually I have to drive two hours to get to kansas city. We live in Buffalo, Kansas. But it is always nice to connect with someone who has some idea of what I am going through.
--- In firstname.lastname@example.org
> I am new to this group. I have a three and half year old boy with
> mild CP. He does not walk, but has started to pull up and cruise.
> has ashtma and acid reflux. He was born weighing 2 pounds 7 oz.
> the first year of his life he was hospitalized twice for
> He was subsequently hospitalized last year, when he was two b/c of
> risks associated with possible dehydration. I have just started
> taking him to Kansas City Children's Mercy special rehab. clinic
> he has so many problems eating. He weighs 24 pounds. According to
> doctor's he is not on the growth charts yet. Of course he has
> been on the growth charts.
> The doctors and ST, OT all recommend that he have a g-tube.
> they started recommending a g-tube before they had even seen him.
> has a swallow test yesterday, but it was inclusive as far as
> aspiration goes, b/c he would not swallow the barrium stuff.
> he was pooling water. He runs a low grade fever a lot. It seems
> he is always sick especially in the winter. The OT says that a g-
> will help to prevent illness b/c he will be getting sufficient
> I am scared to death of his having surgery. The possibility of
> causing further damage to his little lungs or the g-tube causing
> infection that kills him, kept me up all last night.
> I guess I am just asking how successful g-tubes actually are? Is
> worth the risk? What are the real complications and benefits?
> My sister, who spends a lot of time with my son, thinks that he
> refuses to eat just as a control issue. I believe that he is
> sometimes in pain and other times is just being manipulative. He
> really well for my sister, but almost always refused to eat for me.
Hi! Welcome! I am fairly new to the group, as well. I have a 3/12
year old daughter, Natasha who has spastic quadraplegia Cerebral
Palsy. While I do not have the experience to speak knowingly on G-
tubes, I do have quite a bit of experience with Children's Mercy.
We have also been taking our daughter there for years now and are
frequently at the rehab clinic. They have made many reccomendations
for us and I have never had a bad experience. But I always say go
with your gut. Good for you for trying to get
information/reassurance from people who have been there. Sorry I
wasn't much of a help! Since I am also from the Kansas City area,
feel free to email me if you would like. Sometimes it's just nice
having support in your area! I don't know many (Ok, one) parents
who can really relate. Good Luck!
Heather Stein (rockchalkfan17@...
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