support groups for CHARGE

[Guest guest]

Hi All,

I have not written in awhile, but today, my nephew Ben continued

spitting up at my sister-in-law's house and we are all very

concerned about him. It's not just formula, but stomach acid with a

yellowish color. The doctors just don't seem to know what is wrong

with him and tomorrow, he is going back to Children's Hospital for

an indefinite amount of time. I hope they run the tests and find

out what is wrong with him so we can find a solution since he

continues to do this almost every time he eats. He does have a

nissen (sp?) and they've checked his feeding tube out and some other

things and say those seem to be okay(I'm not sure....it seems like

the poor little guy has gone through so much).

My sister-in-law is worried b/c Ben has been

sleeping a lot more, kind of lethargic....just not his normal self.

They have been watching him because his head seems to be getting

larger than it should be and he is right on the border of possibly

having to have a shunt put in....I hope to God that there isn't

fluid on his brain. And if there is, I wish they would figure it out

asap and do what needs to be done.

Has anyone experienced this and if so, can you share with us? Also,

we were curious about support groups in the Mason, Ohio area for

parents of kids with CHARGE....or special needs children in

general.

My sister-in-law has been so strong through all of this. She is

true inspiration to our family and we are so proud of how well she

and her husband have been handling things, but today was hard

knowing that Ben would have to go back into the hospital for more

tests and possibly the shunt. I would like to be able to suggest a

support group b/c I can't even imagine the stress, frustration and

concern she has for Ben and it seems like right when we all think

things are going well, there is another setback. Ben is such a

fighter and if anyone can get through all of these things, it's

surely him. I just want to make sure my sister-in-law and brother-

in-law get to know other parents in the area that can understand

what they are going through since our family cannot totally relate.

I often feel helpless no matter what I try to do to help and wish I

could do more. No matter what, it never seems like enough and

probably never will.

Thanks for taking time to read and respond (if you can) to this

email. I have a feeling this will not be Ben's last time in the

hospital, so I want to make sure they have the support they need

from other people who understand their situation.

Jen

Aunt of Ben (8 months old, 6 months actual)