[tri-med] Re: Mic-Key

----- Original Message ----- 
From: <Annee122884
>I have a question about the Mic-Key buttons.  As a camp nurse this  summer, 
>I
> had a camper with CHARGE syndrome who had a Mic-Key.  We were  wondering 
> if
> she could swim with it in?

Absolutely!!!
Swim in a pool, river, spa, bath tub - anything. Sand can cause some 
irritation if you don't give it a good wash afterwards but for Alex that 
just means a good excuse for an hour long soak in the tub :-) (typical boy 
you can't get them in a bath tub then when they are in you can't get them 
out :-))

Alex has had some issues with diving and his button - if there isnt a lot of 
water in the balloon the pressure created from diving can cause it to pop 
out prematurely so just make sure that the water level has been checked 
recently. The couple of times thats happened his button is really ready to 
be replaced anyway so the balloon has been dodgy to start with. Alex thinks 
its hilarious now because he gets out and we have to go diving for the lost 
button :-)) Some folk put a piece of micropore over it just in case, but we 
are slack and don't bother.

BTW - CHARGE syndrome is Alex's alter diagnosis. Before we knew of the 
trisomy he had been tentatively diagnosed with CHARGE syndrome. I still lurk 
on the CHARGE list and we went to the CHARGE conference in Boston when we 
visited the US in 97.

Of course these days there is a genetic test for CHARGE syndrome back then 
there wasn't - it was a diagnosis of exclusion. But problem wise kids with 
CHARGE are very similar to kids with T-18 (cardiac issues, hearing problems, 
major apnea and feeding issues etc). Developmentally they tend to reach 
milestones our kids don't, but certainly not all do. I always tipped that 
when they found the gene responsible for CHARGE that it would be on the 18th 
chromosome - its not :-(

The big difference between CHARGE and T-18 is that the doctors treat them 
differently, doctors wouldn't hesitate to trach a child with CHARGE or to 
treat their cardiac problems etc. I honestly think that thats why Alex is 
here today - because of the CHARGE diagnosis the doctors treated his apneas 
etc. Had he been diagnosed with T-18 at that point they wouldn't have (and 
they have admitted as much) because they would have believed that he would 
have no quality of life. Of course now he is doing better developmentally 
than most children with CHARGE anyway.

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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