Roll Call

[Guest guest]

I just love hear all these birth and life stories. I think this is a

great way for us to all get reacquainted.

1. My name is le B.

2. We live in n, Indiana

3. My husband, , and I have 4 children. Shye Lynn is 9 and is

44 " tall and weighs 60 lbs and is Non RSS, just got her height from

me..Heheh Brock is 7 and takes after his dad. He is 50 " tall and

weighs 70 lbs and also Non RSS. Carlee is the baby of the family by

1 minute and is 17 months old and weighs 23 lbs and is 32 " tall and

Non Rss. Coby has RSS and is also 17 months old. He weighs 17 lbs

and is 29 " tall.

4. Coby is a twin and I delivered them at 36 wks gestation. He

weighed 2.4 lbs and was 14 " long. He ate from a bottle at 2 days old

and was fed by a NG tube to top off what he didn't have the energy to

finish at each feeding. He stayed in the hospital for 1 month and

came home weighing a mere 3.12 lbs. He has a sacral dimple and a

stage 3 hypospadias. He also had bilateral hernias.

5. He is on Periactin (The miracle drug) and nothing else for now.

6. Geneticist is Escobar at St. Hospital in

Indianapolis, Indiana. He is a god send. He has been wonderful!

7. Dr. Escobar told us at 2 days old that he believed that Coby had

RSS and then at 6 months old confirmed it. Dr. H also agreed at the

convention last summer.

8. Coby has been very blessed. He has always been an eater and

seems to have mild symptoms from the RSS. He has had 2 sets of tubes

so far and will have his 3rd hypospadias surgery. Hopefully after

that, we should be back to a normal crazy life with 4 kids. hehehe

I just love hear all these birth and life stories. I think this is a

great way for us to all get reacquainted.

1. My name is le B.

2. We live in n, Indiana

3. My husband, , and I have 4 children. Shye Lynn is 9 and is

44 " tall and weighs 60 lbs and is Non RSS, just got her height from

me..Heheh Brock is 7 and takes after his dad. He is 50 " tall and

weighs 70 lbs and also Non RSS. Carlee is the baby of the family by

1 minute and is 17 months old and weighs 23 lbs and is 32 " tall and

Non Rss. Coby has RSS and is also 17 months old. He weighs 17 lbs

and is 29 " tall.

4. Coby is a twin and I delivered them at 36 wks gestation. He

weighed 2.4 lbs and was 14 " long. He ate from a bottle at 2 days old

and was fed by a NG tube to top off what he didn't have the energy to

finish at each feeding. He stayed in the hospital for 1 month and

came home weighing a mere 3.12 lbs. He has a sacral dimple and a

stage 3 hypospadias. He also had bilateral hernias.

5. He is on Periactin (The miracle drug) and nothing else for now.

6. Geneticist is Escobar at St. Hospital in

Indianapolis, Indiana. He is a god send. He has been wonderful!

7. Dr. Escobar told us at 2 days old that he believed that Coby had

RSS and then at 6 months old confirmed it. Dr. H also agreed at the

convention last summer.

8. Coby has been very blessed. He has always been an eater and

seems to have mild symptoms from the RSS. He has had 2 sets of tubes

so far and will have his 3rd hypospadias surgery. Hopefully after

that, we should be back to a normal crazy life with 4 kids. hehehe

[Guest guest]

Hi everyone, here is my role call-

1.) Jodie C. (one of many Jodis here) 5'9 " (dont need the weight)

Husband-Terry 5'8 "

2.) Broadway, NJ (little town about 2hrs from NYC and 15min from

Easton, PA)

3.) We have 3 boys--6(today!!)nonrss 53lbs 47 " , -3

(Dec.15)rss, assementry left side, ADHD (Ped thinks possible not

tested yet)23lbs 33 " , athon-9m(June 17)nonrss 20lbs 14oz 29 1/2 "

4.) was a week late and a wooping 9lbs 4oz 22 1/2 " 15 " head

c-section, planned c-section at 38weeks 5lbs 10oz 18

1/2 " 15 " head (they thought he was going to be 8lbs atleast, guess

they messed up there, huh), athon planned c-section at 39weeks

8lbs 6oz 22 1/2 " 14 3/4 " head. All 3 were breastfed.

5.) started ght on Feb 16, 2004 Genotropin .6 he is

doing well with it (eating like a little piggy now, gained 8oz since

dec. weight check). Has never had any other medication and was never

tube fed.

6.) We see endocrinoligist Dr Langdon Childrens Hospital in

Philadelphia, also at chop Dr. Zackia (genetics), Dr son

(orthopedic), we have our 1st appt with Dr H. on April 22nd

7.) was diagnosed at 2months. He went down to 5lbs 1oz

after leaving hospital, had to nurse him every 2 hours for the 1st

4months and then every 3 for the next 4months. Also we were sent to

a specialist to have his head checked because it was so " large "

compared to the rest of him, the Dr ruled everything out and said it

was find. At 2months the Ped. picked up on his assementry of him

left side (arm and leg) and sent us to CHOP. We saw an Oncologist

for the first year to rule out Wilm's Tumor.

8.) now attends nursery school 2x a week and the

elementry school's disabled preschool 3x a week where he receives

some light OT. He is now potty trained. He reached all his

milestones on time, except getting his teeth which he didnt get his

1st one until almost a year. He now bowls and roller skates.

well i probably typed to much but there it is, cant wait to meet you

guys at the convention this year.

[Guest guest]

My children are not RSS.....but you all agreed I could stay because I have

been dealing with a tough situation that hasn't been diagnosed with my

youngest, for that I am soo greatful.

THANKS YA'LL

1). Jay & Brethen, Jay is typing it....(Janice)

2). Belle Chasse, LA...30 minutes from NAWLIN'S french quarter

3). 2 children, neither have RSS, just turned 5 at 41 1/4 " and 41#.

Mathieu is undiagnosed Failure to grow (docs changed it from FTT) We have a

lead that he may have an autoimmune disdorder and he does have a growth

hormone deficiency. currently 28 " 18# (he is finally taking a high calorie

drink, but he still eats like a poig) and he is 15 months. We are currently

ruling out kidney disorders as well.

4). 19 1/2 " , 7. 5 oz, 38 weeks. induced..they broke my water and he came 1

and a 1/2 hrs later. no ptocin needed

5). He has been on Reglan and Zantac for Silent Reflux, I stopped that at

10 months because docs were cl;aiming the reglan was not allowing him to

absorb the food and that was why he was FTT, whatever. currently ona

multivitamin, vidalyin, with iron for anemia deficiency, parent's

choice(generic pediasure) and zyrtec for allergies, he is on some pain

killers right now for stictches on his pinky, but I won't count that.

6). No specialists he see for RSS, but I have about 6 specialists he is

seeing at the Children's hospital in New orleans and 2 of them are at

Keesler AFB in Biloxi Miss.

7). Hopefully we will have a diagnosis for Mathieu soon...He just had

stiches in his pimky finger, and immediatley he started having fevers. It

is the unkown fevers and not urinating even though he is drinking plenty

that concerns me more than his height. I hope when we figure it out, they

have something that may help him deal with his problem.

8). We have not put him on growth hormone yet, because we want to rule out

other factors for growth deficiency including GI problems, kidney problems,

and autoimmune disorders.

Thank again for all your support.

Jay