Brittany is Beehaving...or is She?

Brittany loves to keep her parents on their toes.  Sandy says that even though she can't speak, boy howdy, she knows how to voice her opinion.  When Rich (dad) leaves for a business trip, she let's everyone know her disapproval simply by biting a little bit more (this isn't biting like a 18 month old...it is the effects of her dystonia that make her muscles, more specifically her jaw, to bite down aggressively causing her extreme pain), keeping mom up a little bit longer and well...just being a teen-ager. (I think it is kind of cute...especially since I have one of my own...that gives me plenty of trouble).

Well, as you know, Brittany was supposed to have her trach surgery last week.  But instead, she decided to go the the ER a few days before her scheduled appointment.  And she thought it would be even more interesting to stay for a few weeks. Now, I personally think she was upset I left for Hawaii. She wanted a little "get away" too... but that is just my theory.

Things have calmed down a bit since I came home :)  They have been transferred to Children's Hospital and her parents have fabulous accommodations at the Ronald McDonald House (Sandy and I are a bit confused why they don't have the Bravo channel though).  And as you know, Sandy and Rich, super parents extraordinaire, are always at Brittany's side...she is one loved little girl.

Her trach surgery is planned for Wednesday.  There is an amazing team of doctors ready to give Brittany the best care during and after surgery.  They will remain there for a few weeks afterwards to train "Doctor Sandy" and "Nurse" Rich in all things "trach-care."

NBIA is one tough cookie.  There is a huge need for more research on this disease.  We can help.  We really can.  Please make your donation as I run the Boston Marathon in Brittany's honor and to help raise money for NBIA.  Every penny goes directly to NBIA.