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Hi Guys,

I've been reading your messages for a week and an really impressed

with the support you give one another. I found out about the support

group last week when I attended an RSS get together in Massachsetts

with my husband Errol, son Ethan age 5 and RSS daughter Jillie almost

2.

Jillie had a GT placed when she was 3 months old and a fundoplication

when she was almost 8 months. She had the fundo so young as she had

been in the ICU multiple times with aspiration pneumonias which

subsequently damaged her lungs. GJT's were tried several times prior

to the fundo but she had several intussussceptions (bowel

obstructions). After the fundo, she gained 9lbs in 6 months and I was

scolded by Dr H at convention last year for making her too fat. She

did have some problems with retching for a while which resolved early

this year with the addition of periactin.

Nowadays, she is fed pretty much exclusively via GT and needs oxygen

to sleep or when she gets any respiratory infection. She is not on GH

as of yet but we do have our first appointment with Dr H in NY this

Thursday. I think she is still a little too chubby in relation to her

height to start GH just yet. She has been on a weight maintenance

program for 9 months (i.e. aim is to maintain vs. gain weight)!

I enjoyed meeting some of you last year at convention and then most

recently at the RSS get together in MA. When we were at convention

last year, I could not be as sociable as I would have liked as Jillie

was quite fragile needing oxygen when upset with noise etc.. She is

hardier this year and copes with social activities better. Indeed she

was scooting up to several women in MA last week and flirting with a

few of the men.

Hope your lives get easier and remain enriched by friendship.

Best wishes,

Howland