[tri-med] Re: Aussie Alex

I will be keeping you and Alex in my prayers.
Take Care,
Irene

On 9/27/06, Karen <karens@xxxxxxxxxxxxxxxx> 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
>
>


-- 
Irene
Christina (4), Caroline (3 with partial trisomy 17p) and Kallie (1)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith


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

Other related posts: