[tri-med] Re: pneumonia/intubation/futility?

So do I. (Dr Carey I mean) Alex is JUST an inspiration. I get a kick 
out of hearing his way of expressing himself. Some times I'm not 
quite sure what he really means. eg When Mandy was out here and you 
visited us. When we were in the lounge room talking, just Mandy, 
Alfie, Alex (in Frank's recliner chair, remember) and me with Tess on 
my knee, he asked me "Jocelyn, you know how I'm special, (yes) well 
is Tess more special than me?" I had to pause to think for a second, 
was this his way of asking about Trisomy 18, so I decided to give him 
the benefit of the doubt, and answered "well yes she is". His 
response was  "oouuhhh". I just gave Mandy a sort of helpless look, 
as I didn't think it was the right moment to go into a genetic 
explanation. But yes there is a lot going on in his mind.

At 11:18 AM 28/01/2007, you wrote:


>I think it would be perfect for John and everyone to re-meet Alex 10 years
>after their first encounter. Alex wants to see everyone and tell them that
>its good to have T-18 (his request, exact words and view on the matter). The
>only thing he wants to change about his life is his allergy to rubber, which
>has nothing to do with T-18 really. He also wants to tell people (parents
>and doctors) not to change anything about their kids. By that I think he is
>talking about his ears - he still wants his old "trisomy" ears back!!! I
>will never live that decision down!!!!! For those new to the list - Alex had
>very deformed ears and I had plastic surgery done to "tidy" them. Alex hates
>the new ears (they look good) he wants his old deformed ears back because
>God and Santa may not recognise him with his new ears. Santa is the real
>worry - because he doesnt have an elf ear (Alex's left ear was a Stahl ear -
>like Dr Spock in Star Trek) Santa may not realise that he is part elf and
>therefore not choose him to help with Christmas. You just have to love the
>mind of a child!!
>
>Life consists not in holding good cards but in playing those you hold well.
>                                             -- Josh Billings
>
>Keep Looking For Rainbows!!
>    _--_|\
>  /Karen \
>  \ _.--._ /
>           v Karen, Mum to Alex (12 years, T-18 Mosaic)
>http://members.optushome.com.au/karens
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG Free Edition.
>Version: 7.5.432 / Virus Database: 268.17.8/649 - Release Date: 
>23/01/2007 8:40 PM
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG Free Edition.
>Version: 7.5.432 / Virus Database: 268.17.8/649 - Release Date: 23/01/2007

Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of 
quilts, singer of songs,
Nanna to Carly 19, Mathew 18, Ashleigh 17, Alex 14, and Tess nearly 
10 years old with T18.
also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas & Escha.
Living in NSW, Australia 


-- 
No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.5.432 / Virus Database: 268.17.8/649 - Release Date: 23/01/2007


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

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