[tri-med] Re: cleft palate

Joe and I chose not to repair Ruth's palate.  I might have 
considered it if she had lived longer.  After her lip repair she 
had such bad "mouth aversion" that it seemed like repairing the 
palate was just unecessary pain.  We were working with an OT to 
help her get over the aversion.

Rebecca, mom to Kashi (19) and Ruth (full t-13, 3/25/04-
1/16/05), "stepmom" to Josh (33) and Joe's main squeeze
please visit Ruth's page at 
http://babiesonline.com/babies/r/ruthann/



---------- Original Message ----------------------------------
From: "alang12.1@xxxxxxxx" <alang12.1@xxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
Date:  Mon, 28 Mar 2005 16:35:45 GMT

>
>Does it make sense to fix a cleft palate? Refoel is now nine 
months old. He does show some sucking ability. Does anyone have 
experience with trisomy 13 and severe celft palate. He has no nose 
and restrticted arirways, so there is little chance he will be 
able to get out the trach. Does it make sense to make him go 
through all those operations to fix the palate? Sincerely, Arthur
>
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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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