[tri-med] Re: Nicholas

(((Nicholas))) I am so sorry.
Jayne is this the same as multicystic renal dysplasia?
there is a section on webmd about that, which even includes mention of T18
though haven't found mention of T13.
http://www.emedicine.com/PED/topic1493.htm


Catherine, mom of Becky (Trisomy 13mosaic)



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Mark & Jayne Wright
Sent: Saturday, September 22, 2007 2:55 PM
To: tri-med
Subject: [tri-med] Nicholas


Nicholas had an appointment last Monday with his urologist.  He has another
UTI (3rd one in 6 months) so she ordered a sonogram of his kidneys and and
x-ray of his bladder and we had that done on Thursday (he had 3 cysts on his
kidneys for years and it never changed).  Well, she called on Friday and
told us that Nicholas has renal cystic dysplasia (multiple cysts on his
kidneys) and would only have months to a year before his kidneys would start
to shut down.  She said there is nothing you can do about it other than a
kidney transplant.  We are going to Riley Children's Hospital for his
endocrinologist visit in November and hopefully we can also get in to see a
nephrologist and get a second opinion.  I tried looking for info about this
on the internet but there's not much of an explanation that I could find.
His urologist told me to go to urologyhealth.org
He's doing very well right now.  He's getting aqua therpy at Easter Seals
and is starting to crawl again.   I am so, so sad at this point.  I'm not
ready to let him go.

Jayne - mom to Nicholas - T13 - 12 years old
Hudson IL


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