Hi Katie,
Thanks for the email. I actually wrote the letter about my daughter and
forwarded it to both lists. The Pulmunologist says Brianna's is due to her
recent
soft palate surgery. (That is his best guess anyway)....He thinks our only
option now is to reverse surgery. That means taking away the speech/sounds that
she gained by having the surgery. He says our only other option is the trach.
So, if the surgery does not work, they will trach her.
I'm so frustrated because they are not SURE what is causing the apnea and say
there is no way to find out. I read otherwise. I searched the net and found a
hospital in San Francisco that can do and MRI at the same time as the sleep
study. I asked her ped to make a refrl today. Here's hoping it goes through.
Bri will have an MRI done in 2 weeks to check for brain swelling......wonder if
they can do anything then since she will be 'knocked' out anyway??
Happy Holidays!
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