Roll call

[Guest guest]

1). First Name, Last Initial -- In-ja C (use to be )

2). Where you live, City and State only -- El Paso, Texas by way of the Army

spent most of my life in Houston though!

3). How many children you have & how many with RSS. Please include

ages, heights and weight especially for the children with RSS.

Twin girls (RSS) um about 37 in and 22 lbs, (non-RSS) 39 in and 28

lbs

4). Birth height, weight, premature and by how much. 17 in 2lbs 6 oz and

19 in 3 lbs 12 oz they were 33 wks and 2 days gestation that is like

almost 8wks (2 months premature)

5). Medication(s), feeding tube and how long they have been on it. is on

Nutropin AQ for almost 6 months now to help with her growth and it seems like it

is working, never had a feeding tube or any other serious medications besides

phenobarbitol when she had a seizure like episode which was ruled out as breath

holding spells by her neuro. Other than that we have been blessed but just

waiting for her to grow and gain some weight!

6). Doctor or hospital treating your RSS child(ren). This is really

useful for new members. Beaumont Army Medical Center (Fort Bliss, Texas)

but her doctor is a neurologist out of the military hospital in San .

Dr. he treats almost all the children in the Texas area in the military

system. He is very informed on RSS and growth hormones especially and he is

great.

Optional -- actually the whole thing is optional

7). when diagnosed. Spring 2001

8). Anything else you want to add. -- was taken to a neurologist because

her father had her at the time and he though she was having epilectic seizures

or something. One of the geneologist in Austin hospital consulted on her case

and with out even seeing basically diagnosed her with RSS. It was

amazing and unbelievable at the time I found out about it because I was in

training. But when I read any information I could find at the time about RSS it

was like " Oh my goodness, yes " She had reflux as a baby until almost a year and

if I was not a stay at home mom and feed her extremely carefully and held her up

for at least an hour after drinking her bottle, nothing would have stayed down

and I think she would have ended up with some kind of feeding device. I praise

God for allowing me to go through their (I think) ruffest time with them daily.

Also, RSS seems so unbelievable to me but I thank dear god above that there is a

group who I can talk to when I do need

help. I know I have been pretty quiet in the group lately, but for good

reason, but I will be back soon. I hope everyone is doing good and may God

bless all your family and special little ones (RSS or not)!!