RSS baby - MILESTONES?

[Guest guest]

Happy New Year All,

It has been six months since I last wrote about my son .

He was only 8 days old and I had found out a few days before that he

had RSS. You were all very kind and supportive and helped me get

through those first few weeks. I check into the site often,

but " lurk " more than anything...I just haven't felt like I've had

much to contribute!

Anyway, is doing fine (I guess? How do I really know?). At

his last appointment (12/23) he weighed 7 lbs 3 oz. I think he is

close to 21 inches now. He weighed 3 lbs 14 oz when he was born and

was 15 5/8 " long. His ped says he is doing okay as long as he

continues to move up diagonally on the charts. He said he won't even

be on the " normal " chart until he is 3 years old.

He seems to be a decent eater, just in smaller quantities. He had

some reflux the first few months but that seems to have gotten better

too. He's got severe hypospadias, which the doctor says he won't

operate on until he is 20 lbs. I'm still debating on what to do

about that (may go outside of my health insurance for 2nd opinion).

I was fortunate to meet up with another RSS mom (n's mom Cindy)

who lives in a nearby city. That was really helpful and they are

very nice people! n is also very cute and smart!

For now I just have a few questions for all of you. Some things are

starting to sink in...(like how he should be able to sit up on his

own now, but he can't)...so I want to know what to expect as far as

reaching some milestones. What were your experiences with

your RSS child being able to do things like sit up, roll over, stand,

walk, go potty, etc.? I just want to have a better idea of what to

expect.

We have a state sponsored physical/occupational therapist come in

once a week who works well with him, but she just started a few weeks

ago. We've set some goals for him, but I don't know if they are

realistic or not..?

Any feedback you can provide is much appreciated!!

It's so helpful and comforting to know we are all dealing with

similiar situations/problems. Sometimes I want to vent (for example,

about all the attention he always gets when we're in public, or how

upset I sometimes feel when we're around his cousins who are the same

age but seem HUGE compared to him, or how I get sad because he is

still in preemie clothes and when I see normal 3-6 month old clothes

it makes me want to cry)...but I usually just talk to my husband

about it. Reading your stories though always reminds me we're not

alone. It also helps me put things in perspective and be grateful

for him and acknowledge that things could have been worse (like they

told me he might not even be born). Anyway, thanks everyone! I also

hope to attend the next conference and meet some of you there.

Sorry this is so long...but like I said, it's been a while!

Wishing you and yours health and happiness in the New Year,

Mom to (4 yrs) and (RSS - born 7/3/03)

P.S. I posted his picture in an album titled " C. " if you care

to check him out! :-)