Welcome Becky!

[Guest guest]

Hi Becky. I wanted to welcome you to this awesome listserve.

Everyone here is great and very helpful. I just typed a post to you,

but it got lost somehow, so I will try again.

I have a 3 year old son named who was diagnosed with RSS at 17

months old. I had to take him to New York to get diagnosed by the

RSS expert in the US, Dr. Harbison. He was 17 months old and weighed

10 lbs. 10 oz. and she said he was very calorically malnourished. He

was even tube fed back then! So, you can imagine the frustration.

Dr.s here were wanting us to feed him much more than he could

tolerate at a high rate and he was just spitting up constantly and he

was acting like he wasin apin all the time. was born at 34

weeks weighing 2 lbs. 12 1/2 oz. and was 14 1/4 " . He stayed in the

hospital for three months and doctors couldn't tell us what was going

on. They even told us they weren't sure he would live! It was a

mess and it was a long 17 months until we finally got a hold of Dr. H

and she literally turned him around and I swear, saved his life. So,

I strongly recommend her to you since you do live in New York. We

drove from Ohio!

I don't want to rattle on too long, but I did want to say " HI " and

welcome. Please continue to share your experiences with us regarding

Devan and I hope you get some answers soon. Like everyone else says,

check out the MAGIC website. I see Jodie gave you the address.

MAGIC is just awesome and we were also at the Convention. So helpful

and informative. You also get to meet others dealing with the same

things as you are! ) They kids are just the absolute cutest kids

you will ever see! Naw, I am not biased in the least! ) If you

haven't already, check out the photos section here. You can see

under R.

Take care,

Jodi R.

, 3, RSS, reflux, J tube, rstricted lungs

p.s. They thought was going to have Trisomy 18 also! What a

hoax!

[Guest guest]

Becky,

Welcome to our big family. It is always nice to have new members,

hear their stories, and share the info that we have all learned over

the years.

As you probably know already from reading the posts, my son Max has

RSS and is 17. (My daughter Jenna is almost 20 and does not have

RSS, but we are dealing with some major psychological issues with

her lately - probably a good part of it from being the older sibling

of a child with special needs.) Max seems to have had it all -

asymmetry, malrotated intestines, failure to thrive, ketotic

hypoglycemia, gut dysmotility, g tube, g-j tube, reflux, oh I could

go on and on, but it's too overwhelming for even me to face

sometimes.

The GOOD news is that Max is now 5'4 " and doing very well in ALL

areas. He does not have a feeding tube any longer, he rarely gets

sick, he is much more social than ever, he does well in school (he

does have learning disabilities, probably from not being diagnosed

with hypoglycemia until he was 8 months), and is really turning into

a great young man. He doesn't look 17, but who cares? At least he

is almost as tall as his peers now.

If there is any bright spot in the rough beginning you have had with

Devan, it's that the failure to thrive diagnosis was made before you

took your baby home - and a g tube was placed early. That FTF

diagnosis can be a tough one - Max had that and they took him away

from me for a day or so because they thought I was not bonding with

him. Sigh. I'm over that one now. You've got a good handle on

things, an early diagnosis, aggressive treatment and a great support

group. Good for you!

Again, welcome and feel free to post anything at any time. That's

why we are all here!

Jodi Z