- Eileen

[Guest guest]

Eileen,

was born at 39 weeks gestation, weighing 3# 5oz and measuring 15 "

long. The OB didn't seem to have a clue that anything was wrong before he

was born, even though he did 5-6 ultrasounds. The most the OB ever mentioned

was that was going to be small, and that was said two days before he

was born. The Dr only scheduled a c-section because B's mom was young, and

he was still in a breach position.

seemed to gain fine at first, but then he tapered off, and totally

stopped gaining from 5-7 months of age. In fact, he lost 4oz! During this

time, his oral aversion got worse, and feeding him was next to impossible.

At 8.5 months of age, when we first met Dr H, he only weighed 8#.

Last winter was extremely hard on health-wise. He entered the

Cleveland Clinic 36 hours after our return from our 3-week stay in NY for

his surgery, with aspiration pnuemonitis. He was home for a little over a

month, and returned to the Clinic with rotavirus. After that, he was home

for 3 weeks, and returned once again to fight a 5 week bout with RSV,

missing both his first b-day, and Christmas at home. That's one of the

reason's we are so pleased to have him home this year.

The estimated height I wrote was without RSS, not GHT. Without GHT, he will

probably be well under 5', but for me, the other issues we are dealing with

are much worse than him being short.

suffers from very low muscle tone, and severe hypo-g. His immune

system, although MUCH better than last year, is still low, and he seems to

catch everything he comes in contact with. There are worries about him

developing insulin resistance. Dr H feels that GHT will help all of these

conditions, and might possibly control his hypo-g and prevent Type II

diabetes in the future, something that SGA kids are more prone to.

As far as the eating goes, I'm really not worried. With it seems to

be a control issue. He HAS to control what, and how much, goes into his

mouth, and being continually fed, he doesn't experience hunger, but

continual feeds are a must right now to control his hypo-g.(although he

never showed any signs of being hungry even as an infant. He could go 12

hours without a bottle, and still fight you when you tried to feed him) I

truly believe he'll eat when he's ready, and hopefully we're on that road

now. If not, then it will come in it's own time, some time in the future.

It doesn't seem to be unusual for us to know more than the Drs we have to

deal with when it comes to RSS. We've had many an argument with the Drs at

the Cleveland Clinic because of what we have learned, and they don't seem to

know.

I agree that it's sad about MJF, but you're right, he still looks great.

Pat