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

----- Original Message ----- 
From: "Jude Wolpert"
>>  not sure i could ever do home school but wish you
> luck.

I don't want to - but at the moment its a choice between safety or school - 
safety wins. Hopefully the issues will be resolved quickly and he will be 
back at school ASAP. I don't have the patience, am too much the 
perfectionist plus I need some time away from the master, and he from me.

> any idea of where you might be moving?  must not be somewhere close if
> animals have to be quarantined.

It would be to Tasmania. So still in Australia but because they are an 
island they have very stringent quarantine laws. We can send stuff out to 
the mainland, the mainland just can't send it in.

> GREAT news that you might (hopefully will) be coming to conference in salt
> lake.  it would be great to meet you guys in person!

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

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