Well, we had surgery in May. Unfortunately, the doctor had to
completely take apart the first palate repair and re-do it. There
was a 3 milimeter gap when the varangyl flap should have been closed
while Dean was speaking. We go to Gainseville which is about 5 1/2
hours away. When Dean had his surgery the genetics team was able to
sneak in the genetics testing, something about getting insurance to
pay for genetics testing is much easier when hospitalized than when
not. Anyways, Dean's testing came back as being sticklers.
Dean "looks" way more Marshall's and I am not sure what all this
means. However, I do know that the two syndromes are sometimes
thought to be overlapped and that there is a lot of controversy, so
needless to say, I will hopefully get to have lunch with Dean's
genetics team and try to make sense of all of this. Otherwise, he
came through his surgery with flying colors and was released the day
after surgery. By the time we got home, he absolutely refused to
take the tylenol 3 they sent him home on and I had to beg him to
take plain tylenol and motrin on a regular schedule. It always
amazes me how resilient kids are! His speech is much clearer and he
is able to make obnoxious noises now that he never could before!
Yayyyy!! We go back to FSU at the end of October and will post the
results of that visit when it happens.
Thanks for listening!
Mandy
mommy to Mackenzie age 9, Dean age 6 (PRS and