[tri-med] Re: Sleep Apnea

In a message dated 12/21/05 5:20:25 PM Pacific Standard Time, 
kmcragg@xxxxxxxxxxxx writes:

> , why are they doing an MRI?
> Mitchell was born w/a cleft lip and palate--had them both repaired in
> September. Why does he think that the palate repair is causing it? Did it
> 

They are doing the MRI because of Bri's health issues. She is loosing some of 
her cognitive abilities.....like math, writing..etc. Her ENT and Pulm. doc 
want to do the surgery.(actually reverse the surgeries done earlier this year)
 The Geneticist and Primary care want to rule out all other medical 
issues....the Geneticist is especially concerned because he knows how healthy 
Bri has 
been and what a dramatic turn she has made.
During her upper GI, the barium got 'stuck.' We are trying to see if she has 
some sort of a blockage that is causing the nightly vomiting.....or if it is 
all sleep/mask related. 

So much seems to be going on right now. She does have osteoporosis, so we are 
also doing another dexa scan. ALthough the last report showed she was gaining 
bone mass.  But now her feet need Arizona braces......for collapsed feet!

So, seizures, tumor, reflux, brain swelling, heart enlargement, complete 
blood work....so far that is where we are looking.  ANd hopefully going to have 
a 
more thorough sleep study. 

Bri did have a 3-way flap surgery done in March and June of this year. It was 
a 2 part surgery. The severe apnea started after that, but we think she had 
some apnea before that. So, did her soft palate weaken? Can it get stronger 
with time?  Is this related to reflux? Why do her bones hurt so badly?  Why 
can't 
she remember simple things? So many questions and all I want is a medical 
team that wants to help my daughter. 

Laurie
Proud Mom to Brianna, age 16 w/Trisomy 9p/21 translocation, Brandon, age 13
Marissa, age 7 with Cerebral Palsy and SOD, and new baby Kayla w/Trisomy 21


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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