Re: RSS baby - MILESTONES?

[Guest guest]

I usually lurk as well but noticed we have some similar things with our

children. Keigan is now almost 9 months old and on Dec 15th he was 11 LBS 2 OZ.

We have just graduated to the 3-6 month clothes. At birth he was 3 LBS 14OZ and

16 inches long. As for milestones, Keigan is just starting to sit up if we put

him in the position. He can stay there for about 30 seconds and then topples

over. He has not tried to crawl at all and hates to be put in the position for

it. Mostly he just rolls everywhere. We are working with a PT and home teacher

through our school system and according to them, he is pretty on target. A bit

behind but if you factor in his head size vs. body size he is right where he

needs to be. Hope that helps some

>

>

> Date: 2004/01/04 Sun AM 03:03:07 EST

> To: RSS-Support

> Subject: RSS baby - MILESTONES?

>

>

Mommy to Keigan 4-15-03 (RSS) and Tristian 9-26-01

[Guest guest]

Happy New Year !! I've checked out 's pic....he is just adorable!My

daughter is now 6 but like you we were told that she was' incompatable with

life'.Twice we were counselled cos the docs said she would die before she was

born! All I can say is that Imogen was a little bit late reaching her milestones

but she got there in the end. She didn't walk until she was 3 but this didn't

stop her scotting around on her bottom at a rate of knots! But now she can do

almost everything her classmates can do so she has caught up. I think our kids

can't reach milestones at the same rate as 'ordinary'kids cos they just don't

have the strength in their tiiny bodies...plus their heavy heads don't help!!

But don't worry ....he will get there in his own good time....then there'll

be no stopping him!!!

Best wishes

Eileen

(mum to Imogen age 6 36 " around 16lbs)

soniacardinale soniacardinale@...> wrote:

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! :-)

---------------------------------

[Guest guest]

-Hi sonia!

Iread your post and checked out joshua's pics he is so adorable!!

reminds me of what christopher looked like (except with blonde

hair). as your dr said christopher just turned 3 and he is finally

almost at the 5% on the chart but he always has gone up slowly on

the chart. he is now 22lbs 33 " as far as the other stuff, he luckly

seemed to reach his milestones when he was suppose to but he was

exercised (legs and arms) daily. we are now in the process of potty

training and he's doing fairly well for the most part. but remember

all kids reach their milestones at different times whether they have

rss or not. he will be getting so ot at our local elementry school

soon to help with a couple of small things that he can't do and will

be going into their preschool program soon too. he already is going

to a program 2x a week, but he needs the structure of everyday. hope

everything cont. to be well.

jodie

(nicholas-5 nonrss, christopher-3 rss, johnathon-6 m nonrss)

-- In RSS-Support , " soniacardinale "

wrote:

> 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! :-)

[Guest guest]

Hi ,

I've been wondering how you're doing.

Here are some of the ages that n met his milestones.

sat up at 7 3/4 months

rolled over at 10 months

got up from the floor to sitting position at 14 months

crawled with his head down at 16 months

pulling to stand at 18 months

walking, 21 months

said 10 words at 15 months

I didn't write down when he started scooting on his butt, which is

what a lot of our kids do instead of crawling, and they're very fast

at it, and very cute. but he did that for a very long time.

Once they get past the walking stage, you kind of forget how long it

took to do everything else because he can do anything that anybody

else can do, it just takes a little longer.

By the way, I don't know why your ped would say he's going to be on

the normal growth curve when he's three. Guess he doesn't know

anything about RSS huh?

Well, take care .

let me know when you want to get together!

Cindy

[Guest guest]

Thought I might chime in for a little info. Storm (who is now 8 and

keeps up with the big boys) did not crawl until he was one. I can't

remember how old he was when he sat up, but I know he was sitting at

10 months weighing about 10 pounds. He did not walk until he was 22

months and was not potty trained until 3 1/2 years. He also had PT

and OT as a baby, as well as speech therapy. He is a great kid who

has his moments of HATING who he is and all the meds he has to take!

We are working on this, we have always let him be himself and do all

he can, but for some reason lately he hates it! (Gotta get him back

in Karate, it made a huge difference for him!)

Anyhow, thought I would share!

Carmen