To Saundra

[Guest guest]

Hi Saundra,

I'm , Mom to Jillie - don't think we've posted to each other

before but Braeden sounds as if he's been on a roller coaster ride

like Jillie with the aspiration pnemonias. It must be very hard

having another child the same age needing you as much. My other child

was 3 yrs old when madam was born and it was very hard being

separated from him whilst I lived at the hospital. Does Braeden have

a GT and fundo? Jillie never improved at all till the fundo and

certainly didn't gain weight. Now she's quite healthy looking but

still needs O2 for her lung damage.

I hope to meet you at convention.

Best wishes,

> > > 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!

> > >