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

----- Original Message ----- 
From: "Jude Wolpert"
> oops you stuck your head up so now i want an update of what's up with you
> guys.

Do you just want a list of the disasters?
I think I mentioned that my favourite aunt died just before Christmas - we 
were trying to find her baby sister to let her know and found that over a 
year ago she had also died, and has been buried as a pauper. That disturbs 
me greatly as she has at least 4 sons. She was no saint believe me, but 
everyone deserves a decent burial.

My car became very sick just before Christmas so I stopped driving it until 
I had the money to get it repaired. Its 300 yards to the mechanic and I 
would have made it except I thought that I had better put some petrol in it 
for him - drove to the service station and put some petrol in. Drove out to 
drive around the block to get back to the mechanic and it stopped in the 
middle of the highway in peak hour. Rang the mechanic, got a tow truck and 
had it towed to the shop. The bad news - it died a thousand deaths, three 
thousand actually. The harmonic whatsy broke off and caused the air 
conditioner belt to fall off and then get tangled in the4 engine thingy 
which caused the pistons to seize. $3,000 will take me a couple fo years to 
save so as far as I'm concerned its a write off. The cost of the towing is 
more than I can get for the car as scrap even though I paid twice that for 
the car just over a year ago.

On the positive side it means that my choice is made with regards to Alex 
and school. I was going to teach him from home because of issues with the 
Education Department - at least while I filed a complaint with the human 
rights commission. Now I have no choice. Because of Alex's medical problems 
I can;t be more than 10 minutes from school - walking or even jogging I am 
at least 1/2 an hour away. So my decision (which I was waivering on) has 
been affirmed.

Alex was given a kitten for christmas by my girlfriend. He adored it (you 
know Alex and animals). The bad news - Bonnie (Alex's golden retriever) got 
a bit rough with her playing and accidentally killed it. Hard decision time. 
Bonnie, even though she is 4 years old now has never settled from the puppy 
stage. Turns out she has a hyperactive thyroid. Soooooo tomorrow she goes 
back to the guide dog association. Alex and I are both devestated. She will 
be taken off the pets as therapy program and placed on the pet program.

They have offered us another dog but I have said no - not yet. Firstly we 
need to grieve and secondly we may be moving soon. If we move as I hope then 
all Alex's animals will have to be placed in quarantine for 3 - 6 months and 
I don't want to do that to a new pet.

And thats the good news - my solicitor (lawyer) is optimistic that we may 
get offered a settlement soon. If that happens and if things work out as I 
hope (I am still optimistic that this year is our year) I may see everyone 
at conference. Which would be so neat - its exactly 10 years since Alex and 
I were in Salt Lake City this conference. I am going to be positive and get 
Alex a passport just in case it works out - if it does it will probably end 
up a last minute thing and its going to take months to get him a passport.

What else - oh yes, I came down with pneumonia over Christmas and have just 
started to feel better. (and hence the reason I have been so quiet) I have 
also decided that summer pneumonia is worse than having it during winter!! 
At least in the winter you can curl up in bed and feel sorry for yourself.

Respite care has been its usual nightmare. They employ a worker, train them 
and then they either don't show or leave. His new night nurse is working out 
well though so we are hoping to employ him for some afternoon respite shifts 
as well. Alex adores Stuart so that will be good.

On the positive side Alex and I are heading off to Tasmania again in a few 
weeks. Ronnie is doing a concert with Normie Rowe, Jane Scali etc so we are 
flying down to see them in concert then heading back to Appin Hall for a 
week. We are then going to catch the Spirit of Tasmania back to Melbourne 
(The Spirit of Tasmania is a ferry / boat that travels across the Bass 
Straight) and spend a week with my cousin. Then we will fly back to Sydney. 
No TV crews or cameras this time - a real holiday courtesy of Appin Hall who 
are paying all the fares etc, we just have to pay for any extra food thats 
not in their pantry.

I think thats the major new news in sunny Sydney. Alex has been well - my 
guess about the air conditioning was correct. He is far more stable with a 
constant ambient temperature. He has been busy looking after me and learning 
to do some additional chores - like how to work the washing machine and he 
is now ironing flats (tea towels, pillowcases, handkerchiefs etc). This week 
its back to the school books though..........

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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