s Update.. Roll Call

[Guest guest]

Hi all, just wanted to get on here and say hi and give everyone

Hugs!! Mufreesboro,Tn s MOM to s

RSS/Short Stature he is doing good, we are awaiting the approval for

the Growth Hormone.. Thanks to all of you with answering my Questions

about it , I am sure I will have more when I get started! I just

wanted to say We are doing good he is in a new pre-school and doing

o.k. his behavior is a mess..ha ha

will be turnig 5 on April 8th, 1999 and I cannot believe

it,where does the time go. He has a sister Brittney will be 11 in

June 25th 1993- Non RSS 94 pounds ,but short. He is still weighing

in at 25 pounds and gained 1/2 inch this year we are at 35inches!!

He is on prevacid 1x a day... I had him (two weeks) early due to

Gestational Diabetes they thought he was going to be a big one due

to the diabetes and he was DOA and had nucal cord and was

(resetssitated),Scary!! He weiged 6pounds 1 oz but was very tiny.. at

6 months a football was bigger than him... he was delayed and failure

to thrive at birth and into months age he had hip dysplasia and born

with Hypospadias. He has had two surgeries already and needs a

third.. he crawled at 10 months for the first time we double diapered

him and then more diapers due to surgery that set him back.. he

walked at 18 to 19 months!!!!I only knew of him being delayed and

failure to thrive..Tiny because I am short 5 ft. and his Father only

5ft4 He got sick at Three years old with a fever and a white blood

cell count of 18,0000 then dropped to( 34... ) and they couldn't

figure out was wrong with him,found out( Double Pnemonia) he got out

and His pediatrics Dr. Humprey (Murfreesboro Medical Clinic)

set us up with an Endocrinoligist,Dr. at VANDERBUILT

CHILDRENS HOSPITAL, NASHVILLE TENNESSEE .(Wonderful Dr. and really

knows what he is doing and loved his " Magic tie " ,knows of

Dr.Harbison and definitley recommended her, I was confused but found

out he had RSS at 3!! It was like a whole new world finding out but

in shock, Thats when we found out about Magic and this wonderful

support group You that know us from the convention and to those

new..We found out all the things leading from birth finally could put

a name to it RSS!!He has 25 charecteristics but the Dr. Rusell and

Harbison said he is mild.. good muscle tone - No g-tube - Eats good

now and snacks throughout the day..He has also been diagnoised with

Oppisitinol Defiant Disorder, Obbsessive Compulsive Disorder, Sensory

Integragation Disorder ,Speech articulation Disorder.. Most of these

kids don't have this? Headbanging and used to sometimes (self

mutalte,on Zoloft took him off). He rocks exssesively in the carseat

and at night to go to bed ,bangs his head against the door and won't

sleep in a bed, he rocks out of it and hits his head and doesn't know

it.Great kid with a loving heart and sweetnest but WHEW he isn't

going to let nothing stop him.. Loves the out doors and all his

activities, fixing to start him on GH He is wearing a size 12 to 18

month clothes and 6 infant shoe!! YEAH!! We have been busy with

the new school and all, I also have in in Speech, Gymnastics

Taekwando and,Bowling and Soft Ball!! I gotta keep this wild one busy

and if you remember him from the convention you know ha ha... I have

came on here and tryed to keep up with things on here but it has been

hard... Just wanted to do the roll call and give some info to you

all..We aren't going to make it to the convention this year.. I will

miss all ya'll I met and really wished I could meet all my new

friends.. Hope things go great this year and think of us!! Maybe next

year and he will be on the shots so we can see how much everyone is

Changed!! Well hope I answered everything and sorry this is so

long.. I just wanted to let you all know about and catching

up since I haven't been on here... Were are still here and o.k.

Hugs to all of you!!!!I love the roll call it is getting us knowing

each other and helping with so many questions!!! Hugs,

s Anyone can e-mail me privatley if you want if you have

questions . I know I will be asking some soon!!! Everone Take Care