Re: Chat messages to beth

[Guest guest]

You guys better be careful soon. All these wonderful emails singing my praises

to Beth, you will swell my head to the point I can't get in the computer room.

Then where will we be???? LOL

Everyone knows how excited I get when Canadians come on board and I have had 2

this week that are actually close (reasonably speaking) so it's been pretty

exciting for me. No offence to Dawna, who is in Thunder Bay but you guys have

TOO much snow up there for me to drive through!! LOL

Oh and Beth, Charlene......Leah has been on the emails today. She is out in

Alberta. So we are holding strong us Canucks eh?

Deb!

Re: New Diagnosis

Hi Beth and welcome to the group. You will absolutely love it here.

The support and love everyone has for each other is amazing. And,

you will build so many lasting friendships that take you off the list

and begin personal emails. There are several of us who do four way

emails! It is so fun.

I have a little boy, , who is 3y, 8m and has a gj tube to get

the nutrition he needs into him. He was diagnosed with RSS at 17

months old at which point he weighed a mere 10 lbs. 10 oz. At that

point, we had to do anything we could for him. He also has a big

brother who adores him and they have the normal brotherly

relationship. But, it took some time for to actually be able

to interact with as he didn't walk until he was 23 months old

and could only get around by scooting on his back or pushing forward

with his legs with his head on the floor. His head was just too

heavy for him to hold up on his own.

But, is doing very well now. If you have read some of my

previous messages, just went through eye surgery without

complication. And, is recovering very well and thankful to be home.

It seems our kids just have an inner will and drive to get them

through these tough times. So, take comfort in knowing that they are

very strong children emotionally and Sydney will do well, you will

see. It is hard, no one will deny that, but it is a hard that is

bearable thanks to the joy that our children bring to us.

I hope to see you on here a lot now and hopefully you and Deb are

close enough to meet someday! She is a great, great person and we

email frequently! Love her! ;o)

Hope to talk to you and see more from you soon,

Jodi R.

>

> 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.

>