Olivia's ped/genesist appt.

May 31, 2004

Things went very well today with the new ped. that we discovered

with Olivia's dental surgery. Although he doesn't know as much as I

thought he would about RSS, at least he's heard of it before.

Because Olivia is so terribly grumpy/demonic/tired etc. on the

Cyproheptadine he wants us to stop using it so she'll at least be

happier with life all round. I would like to see if she gains some

real weight on it but I would love to have my sweet little girl back

again too! (and we haven't started the AM dose yet).

We'll be starting the Pamidronate IV treatment for the brittle

bone disease on July 5. We're really hoping that it will strengthen

her bones. The IV will run for 3 hours a day, for 3 days in a row,

every 3 months.

The Genetisist was glad that she's starting the Pam treatment and

is now on the fence now if Olivia is RSS or SGA. He was sure RSS

before but there are so many features that RSS and Osteogenesis

Imperfecta share --> blue sclera, bossed forhead, head big for body,

triangular face with small mouth, poor muscle tone, delayed

developmental milestones. There are more but you get the jist of

it, that's another reason that she's such a hard diagnoses.

I told the Genetisist that we're over the need of a label now. In

our hearts and for our stress levels we decided a while ago to treat

Olivia symptomaticly. What ever comes up we will treat. It's very

nice to know that RSS and SGA are basically treated the same so

we're not exactly lost like if it were something altogether

different. He was also very excited that we're going to the

convention this summer! He's looking forward to a definite

diagnoses from Dr. H and go from there. Whew!! Are we getting good

Dr's or what!

I've rambled on long enough, it's been a long day!

Leah mom to Ash 9 and Olivia 4.5, 19lbs, 33 "

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