We're Back From The Convention Too!!!

[Guest guest]

Well we made it back home today at around 3:30 PM. We had such

an amazing time at the convention that it'll take me days to digest

all of it! It was so great to meet every one in person and have a

REAL chat!! Pat, Jodie C.,, Cara, Jodi R, Sharon, Kim and

everyone else! (there's no way that I can name everyone either!!)

It was like being a " normal " family for a weekend, sure everyone

looks at the kids but everyone knows what they have, no one

stared... wondering " what's up with that girl " ..... you all know

what I mean I'm sure!!

Our meeting with Dr. H went quite well, Olivia is definatly RSS

which surprised me at first since our appt. was right when we got

there, but after a while I really started to see it in her. Dr. H

tweaked Olivia's meds and wants her to start GHT but first we need

to get a whole bunch of weight on her before we can start that since

she's really underweight for her height (that wasn't news to us).

With the new meds she should be able to keep her food down better

and that should put some pounds on!! We'll also run a couple of

tests to see excatly how things are going.

Debby's right about the money!!!!!! I'm very glad to have our

colored money back, much easier! (how lazy am I??!!)

Chicago is GREAT!! We had Sunday free so Trent and I took the

kids Downtown on the Train!! How exciting was that!! We went up

the Hancock building and down to the Navy Pier, walked all over

Downtown, it was a blast! We're already excited for next years

convention (we'll get a room that's not 2 miles away from the

activities though!! Pat and Cara know what I mean!!)

Take care everyone!!

Leah, mom to 9 yrs and Olivia 4.75 yrs, RSS, OI, 18.2 lbs

(lost a pound , 33 " , Lactulose, senokot (changing to Mirilax),

Zantac (changing to a PPI), Tums, Cyproheptadine (periactin)again

soon!