To Kim C and Jodi R

[Guest guest]

Hi Kim and Jodi,

Have been following your posts on your boys who seem to have followed

a similar path to my daughter Jillie. She is 26 months and was in

hospital 10 times in the first year and still requires nursing care

for oxygen need etc.

Jodi, I know your son is a similar age to Jillie. I think you are the

one that J told me about a few months ago when I spoke to her.

She said there were only a few RSS kids who had had significant lung

problems because of aspiration pneumonias. I hope we get a chance to

chat at convention. You have a handsome boy!

Kim, I am heartened by the fact that your son is no longer on oxygen

and is doing better. How old was he when he no longer needed oxygen??

You mentionned he had years of feeding therapy. How does he eat now?

Jillie got a GT and tongue lip adhesion at 3 months, several GJT's

which all intussusscepted (obstructed her jejunum), a fundo and

central line placement at 7.5 months and reversal of tongue lip

adhesion at 11.5 months. She had many ICU admissions with pneumonias.

I felt I should just give up normalcy and move into the hospital.

This year has been better but her speech, feeding, occupational and

physical therapies are pretty gruelling. However, anything is better

than being in the hospital.

Hope to see you both next week!