[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Crystal Napolitano
on 1/14/2009, 11:02 am, in reply to "partial trisomy-looking for information"
24.73.61.99
Rachel, my son has 22q13.31 duplication and monosomy 1p36 deletion. My son had a G-Tube placed when he was about 1 1/2 yrs due to not gaining weight even though he would eat. He is now 3 and is still on the G-Tube and is now 26 lbs and 34 inches. He is smaller for his age, but the doctors don't want him overweight because he doesn't walk or crawl yet and they don't want his weight to make it harder for him to try. I would like to talk more. Please email me cownbey1688@yahoo.com
Crystal Napolitano
--Previous Message--
: My baby is nine months with partial
: trisomy 22q13.3 and monosomy 21q.My
: baby barely eats (between 200 cc and
: 400 cc in 24 hours although we do put
: more calories in her bottles) and is
: not growing much. The doctors are
: pushing off the tube because she is a
: happy kid, she is not dehydrated and
: they are not sure she will grow more
: if she gets more food. I can't help
: wondering if she will develop more
: with a tube. If anyone has any
: information about this, I would
: appreciate it.
: Thanks,
: Rachel
:
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