Updates, Questions and Comments

[Guest guest]

Hey Y'all,

In the great gaame of life, we've been tossed another lob ball. I'm

backing up, rethinking and investigating our plan for Connor's

future.

Here's the good news first. Within two weeks we have received the E

& D waiver and Medicaid for Connor. Yippee!!! Now when the docs

want to order all those funky tests, we have secondary insurance to

back it up. I'm checking on if they cover gh shots and kindercal.

Our endo visit was mixed. Connor's growth plateaued, but we were

expecting that as his two year old growth spurt leveled off.

However, so did his weight. Mind you Connor has had one cold and the

Croup, but to have no wt. gain in three months, especially after

Christmas munching was a little sad to take. His stats right now

are 27 inches and 21 pounds. His asymmetry is still mild but the

back isn't improving, even with regular P.T.

Oh, did I mention that Connor's been on Periactin and still didn't

gain. Sigh.

So, on Wednesday, we go see the Pediatric G.I. specialist (who I

love) and discuss the g-tube. My speech therapist assures me that

while Connor is an oral eater now, he will continue to be even on

the tube. She is supportive of the possibility.

Oops! Got to go, Graham is sick.

Will write more later.

P.S. Joe Beth: Perhaps applicable solutions using your extensive

knowledge would be more digestable for us who have children with a

wide range of phenotype in the RSS syndrome. Simply put, give us

some receipes, not studies and let's see if our children's BSL's,

IGF's and other endocrine issues can be addressed. Oh, don't know

what those are? May be you should study RSS more before applying a

blanket doctrine for all. Just my few crumbs of thought.