[tri-med] Re: Sleep Apnea

Laurie
Wow, you do have a lot on your plate right now. Isn't it sad that parents
are the ones that are doing all the research to figure out what is wrong
with their child? It is all so overwhelming and frustrating. I know
Mitchell's apnea alarm started going off after he got his trach....how
ironic is that? He NEVER had an apnea alarm before that. I'm certain he had
apnea before that, but who knows.
I will pray for your family and Bri. I sure hope that you can find the
answers you need to get her the help she needs.
Katie
Mom to Mitchell mosaic t13 www.caringbridge.org/mn/mitchelljohncragg


On 12/21/05 9:19 PM, "TRIER9@xxxxxxx" <TRIER9@xxxxxxx> wrote:

> 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
> 


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

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