[tri-med] Re: Karen-apnea

All I have to say is "join the club!".  When Elanor was diagnosed, our 
pediatrician gave us some pages copied from an old medical textbook, and it 
was horrible.  Then we found the wealth of information on the internet, and 
got connected with SOFT.  Unfortunately, we didn't find out about this list 
until about 2 years ago.  I wish we'd found out about all of these wonderful 
people sooner, but better late than never (my motto)!  It seems as if we all 
have taken it upon us to educate the educated!

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
----- Original Message ----- 
From: "karen thorsten" <karen7458@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, December 15, 2004 8:51 AM
Subject: [tri-med] Re: Karen-apnea


> Thanks for the info Jocelyn. You know, I get all this
> info from everyone  here and pass it on to my daughter
> (Julians, mosaic partial trisomy 1 , mom) as she
> doesnt have a computer. I think its been overwhelming
> for my daughter to deal with . She's only 20 years
> old, unmarried and just trying to survive. I
> sometimes think she thinks I'm butting in and I really
> try not too. So what I've been doing is printing off
> all the info from here and just passing it on to her .
> I think she so badly wants to believe he's "normal"
> and like all other kids but the truth is.....he isn't.
>
> Honestly, the doctors havent told her much of
> anything....all the stuff I've learned is from here
> and WE take the info TO THE DOCTOR.Its kind of
> backwards I think. They have said NOTHING about apnea
> and we know he has it so we'll AGAIN take it to them .
> And if its not apnea then its something else similar
> cause he snores, doesnt breathe for long periods, etc.
> This sure is something .....trisomy.......never ever
> heard the word before until 2 weeks ago.........now
> its in my daily vocabulary...........Karen (Julians
> grandma)
>
>
>
> --- Jocelyn Knowd <jknowd@xxxxxxxxxx> wrote:
>
>> Hi Karen Thorsten,
>>
>> Re the CPAP for apnea. We started Tess on it early
>> on, a couple of months
>> old I think. She is so used to it now. However they
>> wait till she has gone
>> to sleep and then position the mask, as she had a
>> tendency to try to pull
>> it off. But the very first time she had it placed on
>> her face, she relaxed
>> right down and went into a peaceful sleep. It was
>> just as if she felt "oh
>> thank goodness, I can breathe properly now.". It's
>> like anything else our
>> kids have to put up with, they get used to it in
>> time. It becomes part of
>> the bedtime ritual. Tess is almost eight years old
>> now. Without CPAP I
>> don't think she would still be with us, as she had
>> both central and
>> obstructive apnea. Hope this helps.
>>
>> Jocelyn - Tess's Nanna.
>>
>> At 04:06 PM 14/12/2004 -0500, you wrote:
>> >On Tuesday, December 14, 2004, at 03:56 PM, karen
>> thorsten wrote:
>> >
>> > > Loren,
>> > >   thanks for the info on apnea. I cant believe
>> how
>> > > much ive learned in just a week......ABOUT
>> EVERYTHING
>> > > having to do with Trisomies.....thank you thank
>> you
>> > > thank you!!!!! JUlians grandma    Karen
>> >
>>
>> 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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>
> 


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

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