[tri-med] Re: Need reassurance

At 03:47 PM 20/12/2004 -0600, you wrote:
>Hi everyone,
>
>My name is Julie, and I have been lurking for several months.  My husband
>Scott and I have a four-month old daughter named Emma Grace.  She is full
>T18.  Some background on Emma--
Hi Julie,
Our Grand daughter Theresa known as Tess, who has full T18 is nearly eight 
years old. In the early days we were given the usual prognosis "take her 
home to die". She was bagged several times and finally they did a sleep 
study and she went onto CPAP for sleep apnea. In our case Tess's mother 
Julie, was a doctor, so she knew what to ask for and when asked "what do 
you want us to do for Theresa", she said "I want you to treat her like you 
would any other normal baby". Tess has no major health problems, and has a 
small VSD. She suffers from reflux and is treated with Omeprazole.

Tess attends school, at a normal school with a special unit attached. She 
has been fortunate to have wonderful teachers this year. and she has really 
made progress in social skills and some physical.  Tess knows, and loves 
her family members and friends, loves music, and generally enjoys her life. 
Her parents are divorced now, and Tess spends four nights with her Mummy 
and three nights with her Daddy (our son). (No Tess was not the "cause" of 
the marriage breakdown, I find people often assume that, and it's not true).

I was a major carer in Tess's early years, but now only see her on weekends 
for a couple of hours, when Daddy brings her to visit. I really miss her a 
lot. We used to have a lovely time together. Tess is pretty well unable to 
sit up on her own (although she did once), or stand un-supported, but she 
kicks her legs all the time, and when I stand her up between my knees and 
play CD's she will bob up and down to the music. Our son Ian has always 
been a devoted father, and looks after Tess very well on the days he has 
her. He also gets half the school holidays, so we will get to see a bit 
more of Tess during the Christmas holidays, which are about five weeks, as 
we are in our summer here in Australia.

I won't say the last eight years have been a picnic, there have been oceans 
of tears shed, and there were times when we thought she wasn't going to 
make it, but Tess had other ideas.  I have been on this list since its 
inception and have seen many children come and unfortunately go too. It is 
heartbreaking to watch the families struggle, but they are a courageous and 
practical group and just get on with the job. I've grown to love and admire 
the list families.

Recently Tess tried out in a Hachem walker, (like a pony walker) which we 
are able to borrow. She loves it, and I was delighted when she was able to 
move herself backwards from the dining room right into the kitchen. She was 
so pleased with herself, and I was bursting with pride. It is so good to 
see her move on her own accord.

As you can see, we are proud grand parents.

Your 2nd last paragraph says it all "My husband and I aren't ready to give 
up on Emma--she is a fighter and has surprised us many times."

>So I would say "GO WITH YOUR HEART". Especially if you have good family 
>support. If you want any more information on Tess, you are welcome to ask me.
>
>Julie, wife to Scott and mom to Emma Grace, born 8/5/04
>Topeka, KS
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

Jocelyn, wife to Frank, mother to Ian, Gillian & Susan.
Nanna to Carly 17, Mathew 16, Ashleigh 14, Alex 12, & Tess 7 years (T18)
Living in New South Wales, Australia


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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