Reply to Beth from Charlene

[Guest guest]

This is great that there are people close by. is 4 1/2 and

started J.K. this year. He and his sister are in the same class, and

this has presented us with some really funny challenges (sibling

rivalry is not something the teacher has signed on for). We kind of

always just went with the flow where Will is concerned because his

is #4 of 4 and we settled in to life with RSS and what that meant

for him. His starting school opened up a bit of a floodgate, so to

speak, with regards to RSS that I think I knew we'd eventually have

to deal. has no real weight to height disparity, both

currently rest on the chart but below the third percentile.

Consequently he is really small, not unlike most RSS kids, but we

were shocked this year when we were told that he might not be able

to take the bus. Apparantly the bus driver was really nervous the

first few days he went to school because was so small -

every time he'd stop the bus he noted that moved

around 'like a rag doll'. We fought this because every school age

child has right to bussing and suggeted that they make accomodations

on the bus, i.e. seatbelt (stupidest thing ever that they don't have

seat belts anyway). Consequently because my husbsand and I are the

proverbial 'squeaky wheel' we have bussing but interestingly enough

no seat belts were put in place. The teacher, who is amazing and

very open to Will, has brought a few things to our attention that we

were content to ignore at one point in time. I posted the other day

about his voice and its unbelievable pitch. I recognize now that

perhaps some of the things that I hoped would go away, or could at

least be ignored won't. I laughed when I read about shoes - we

couldn't find a pair of winter boots this year, even remotely close

to his shoe size (at least none that were age appropriate). We

ended up with a compromise of boots that are too large, with a logo

on them that my husband swore our children would never wear (spider

man and lights that flash) and two insulated insoles, cut to size to

make them fit. loves them, my husband is horrified and I'm

proud of my achievement. My eldest daughter was cute, she has had

all of her friends and their moms looking for boots for Will. Age

appropriate clothes are a big thing for us now that he is in

school. Sorry this is so long. Look forward to hearing from you

and chatting about your little one. Take good care!

Charlene

> >

> > HI,

> >

> > This is my first time posting. We were just given the

diagnosis

> > yesterday that Sydney (22 months) has RSS. Sydney is an

identical

> > twin and her sister Leah is unaffected. They have a big

sister

> > Charlotte who will turn 4 later in February.

> >

> > Sydney's struggle began very early when we discovered at about

26

> > weeks that she was much smaller than her twin sister. The

doctors

> > became quite worried at 27 weeks and I was admitted into the

> > hospital where I had at least one ultrasound, sometimes two a

day.

> > I was able to carry the girls to 33 weeks (6 weeks in the

hospital

> > with a 2 year old at home!) and the doctors delivered when the

> blood

> > flow reversed. Everyone assumed that we had twin to twin

> > transfusion syndrome or placenta discordance. Sydney was 2p,

11 oz

> > and 41 centimeters at birth. Her sister was 4p, 8 oz.

Sydney was

> > in the NICU for 6 weeks and Leah just two. Sydney was gaining

> > weight very slowly although she breast feed from about week

two

> on.

> > We just could never get much in her at once.

> >

> > Her gross motor skills were very delayed and by about 6 months

> > everyone was starting to get concerned. She had several tests

done

> > but nothing was showing up. At first the doctors felt that

she

> had

> > Prader Willi Sydrome but the tests all came back fine.

> >

> > She went through her most difficult period at 10-12 months.

She

> was

> > actually diagnosed Failure to Thrive and it looked like we

were

> > heading towards a g-tube. However, as a last resort our

doctor

> > suggested domperidone and it worked wonders for her. She

finally

> > got back on her curve (even though it was well below the 3rd

> > percentile) and started gaining some weight.

> >

> > When we finally got her bone age tests results back showing

severe

> > delay (3-6 month age at 18 months) the geneticist made the

> diagnosis

> > of RSS.

> >

> > Sydney is just finally walking this month with the help of

weekly

> PT

> > and her speech is really coming along over the past few

months.

> She

> > is much happier now that she can move around like her sisters

and

> > gets much less frustrated. She never did crawl so this is

real

> > freedom for her.

> >

> > Sydney is still wearing a size one shoe, making it very

difficult

> to

> > find walking shoes for her. (If anyone has any suggestions, I

> would

> > love to find a source for very small shoes.)

> >

> > At 22 months, Sydney is 19 pounds and 74 centimeters. I am

sure

> > that we will have many appointments over the next few months

and at

> > this point my husband and I are just trying to gather as much

> > information as possible. We live just outside of Toronto,

Canada.

> >

>

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