[tri-med] Re: Aussie Alex

Hi Karen,
I am so sorry to hear about Alex - it is always so special to read about him 
and the great things he has done.  That has and continues to be a blessing for 
me.  I will pray for Alex that his condition improves and that you are 
strenghened as you go through this difficult time.

I would love to get a copy of the magazine article in FIREground if possible,

Gary (and Elizabeth)

Karen wrote:

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

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