[tri-med] Aussie Alex

Thanks everyone for their concern. There is not a great deal that anyone can do 
at the moment. 
As I posted a month or so ago, Alex's kidneys are not working properly anymore. 
I know that some expressed disbelief and seemed to think I was making it up but 
its a reality for me I'm afraid.
Everyone, teachers, aides, even his nurse is starting to ask whats up with him 
as he is no longer the Alex that everyone knows. He doesn't look well and he 
certainly doesn't act it. Even his new pediatrician said he looks so different 
at the moment.

At the moment he is very tired. He is sleeping 14 - 16 hours a day which of 
course means that school is very difficult. Even when he is awake he is tired 
and as his teacher puts it "dazed".
His systolic blood pressure is around 140 - 150 and diastolic is around 95. 
Thats high enough for any 12 year old but its really high when you compare it 
to his "normal" which is around 90/50. Its giving him symptoms of headaches and 
a feeling that his head is going to "explode". Its also making him very anxious 
and fearful without having anything to be afraid of. Alex actually describes it 
as being "angry" on the inside.
His facial assymetry is really pronounced and he looks "funny" because he is so 
puffy, particularly around the face. I miss those gorgeous blue eyes.
He is having repeated nose bleeds - and I don't mean typical nose bleeds - each 
one produces enough blood to drench 2 or 3 face cloths and result in a change 
of clothes. Alex is finding them distressing when they occur in the middle of 
the night and he wakes drenched in blood.
He also has an insatiable thirst and is having to get up 3 or 4 times a night 
to get a drink.
I am not sure which symptom is causing it but his behaviour is also effected 
and instead of being his typical placid self he is very crabby and irritable.

All of the above is of course setting off his other known problems, and it 
appears that he also has an abcess on one of the lymph nodes in his neck. 

The nephrologist had to be convinced to treat a child with T-18, but he appears 
to be doing the right thing now. Its hard to tell though and of course there is 
the blanket ban regardless on things like transplants for our kids so its hard 
to tell sometimes. Thats not to say that I wont try fighting it if I have to 
but.......... The pediatrician was very embarassed talking to the nephrologist 
on the phone with me sitting there hearing his side of the conversation.
"yes that date of birth is correct"
"yes he is an amazing child"
"no he is not a vegetable"
"yes he does talk"
"yes he does go to school"
I had to tell him I was used to it and not to be embarassed.

Its all left me feeling pretty drained, and exhausted. But life goes on 
regardless so there are always other things happening. (and on that vein, yes 
Tracey I did know it was about to happen - it didn't make it any easier to 
swallow though, or stop me crying buckets for the last week or so, I am just 
not sure who I am crying for)

All in all I am really worried about my little man. His symptoms are escalating 
way too fast, but then again I wish he didnt have any symptoms at all. It was 
really hard to bite the bullet and cancel his birthday bridge climb as well 
simply because he was too weak to do it. He was sooooooooo looking forward to 
it. I also can't get used to seeing my live wire too tired to do anything but 
sit.......

I do have the magazine article from better times earlier this year and can 
share it now if anyone is interested. It appeared in FIREground and is in pdf 
format if anyone wants a copy.

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 (11 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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