research & measurements

[Guest guest]

Hi, everyone, remember when I said I was going to get the tape measure out

because I disagreed with the doctor's height measurement of Trey? Well,

and I measured him last night and instead of 18.74 inches we came up

with 26 and 1/2 inches!!! Quite a difference, huh? I told that we

better get the information to the doctor because his medical records are

wrong. I hope they re-measure him. Also, I wanted to make a comment about

the questions on IUGR, hormones, etc. has asked these same questions

to me. She read all the e-mail and was so encouraged by what you had to

say. Is there any research being done along those lines for RSS? Is that

what the Magic Foundation is doing? I wanted to get an opinion about

something also. Would it be possible to tape Dr. Harbison's speech at the

convention and then they could sell the tapes to people who aren't able to

attend. The profits (if any) could be given to the Magic Foundation. I

keep feeling that there are so many more families out there that don't know

anything about RSS and would benefit from this greatly. I recently posted a

message on the " Oprah " website about RSS. The website has a message board

for support groups. I suggested to them to put RSS on it. I hope they do

it. I told them that children have been taken away from their families

because of the " failure to thrive " . (did I say this before?) was

turned into DCFS by the physical therapist and she had to go through a

humiliating investigation. Trey has about 5 doctors/specialists that stood

up for her. As I said before it took 15 months for a diagnosis. Well, I've

rattled on long enough. Please give me your opinions. , grandma to

Trey 15.84 lbs. and 26and 1/2 inches (our measure)!