I Can See the Light!

The Boston Marathon is only 7 weeks away!  I am so excited to run the race this year.  I am a total numbers kind of gal. If I am scheduled to run 8 miles, I run 8 miles. If I get back to my house and my Garmin reads, 7.89, I will keep running up and down our street until my watch reads exactly 8 miles.  I rarely stray from my schedule. If I have to get in 40 miles in a week...I do it...even if I am running in the dark.

And after plugging in the latest donations (and times), I realized we are only 341 dollars from our goal of raising $2620.00 for NBIA.  I can totally SEE THE LIGHT!!!  (I know there are still a few more checks at the Leap Home...we will get those in as soon as we can).

Many of you have expressed an interest in donating to the Boston For Brittany Fundraiser...and we are approaching race day.  We need you!  Please be sure to get in your guesses and money before April 18.  I am happy to take your donations as well (make your checks out to NBIA):

14807 Ashby Oak Court
Haymarket, VA 20169

And for those that have already joined in the giving, Monday, April 18 will be tons of fun as you follow my progress via the internet (there are usually 5 or 6 mats I cross over, revealing my progress and estimated finishing time).

So as far as my number obsession goes...there is no way I can be satisfied with nothing less than $2620...please join the fight for  NBIA and help me reach my goal!

All is Well

A quick update on Brittany's surgery yesterday.  Everything went great.  She has been put under sedation for the next few days to be sure her new trach stays in place.  More details to come...

And if you want to keep updated, click here.

Remember to make your donation for the big race in April (today I have to run 20 miles...wish me luck).

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.

Beautiful Brittany!

The sun is out...it is a beautiful Sunday.  I came across this picture of Brittany (obviously from this summer from her cute get-up) and just had to share.

Brittany is a beauty.  With so many struggles she continues to bring sunshine to all of us.  After a week of biting, delays in the oral procedure due to a mysterious swelling of her legs, feet and face, a trip to the ER, she is still smiling!

In the next week or so, she will be getting a Trach.  It comes after much thought and prayers from her parents and long talks with her doctors.  Our prayers join yours, Sandy and Rich, as the surgery draws near.

I will keep you all posted.

In the meantime, take a moment to write a check to NBIA in honor of Brittany!  Please include your guess for my marathon finishing time!  We still haven't hit the $2000 mark...please help make it happen!

Hey wait...an update...WE HIT THE $2000 mark!

A Helping Finger

Brittany has had one tough week (so has her mom's fingers, mine for about two hours and Garth's big one as seen pictured).  It was necessary to keep a finger or two in her mouth over the past few days to keep her from clamping down on her tongue and cheek.  I think novices, Garth and myself, did a pretty good job keeping things under control the other day...

Her facial dystonia has been the culprit!  Today Brittany heads to the George Washington Hospital to undergo a procedure to try and find a way to protect her tongue from her unrelenting jaw muscles that send her teeth clamping down on anything in their way (ouch!).

Will you offer your prayers in her behalf as she is put under today?  And keep those prayers coming as the possibility of a trach draws near.

We love the Leap Family...and know you do too.

Remember, the Boston Marathon is drawing near...don't forget to send your donation (and make your guess)!  NBIA needs you.