Brookie Update

Quick little update on Brookie Bean. She had her sleep study last night. She was a rock star - I wish I would have thought to take a picture of her - I have NO IDEA how she slept at all - probes on her head, by her eyes, and on her chin. She had a belt thingy around her chest and another one around her diaphragm. pulse ox on her toe and more sticker things up and down both legs - wow!
This is our last "hoop to jump through" before we can schedule her hip surgery. So, we are hoping nothing crazy comes back when they read the results.
Unfortunately her seizures are back daily :( booooo we are upping her keppra again she is on the highest does of Banzel she can be on for her weight. I assume that if this mixture does not work it will be back to the drawing board on a new mixture of anti-seizure meds :(
On Friday we are heading to see a surgeon about her g-tube. Her current one is WAY to big and her GI doc feels "she will grow into it." which of course is not acceptable - it was chosen because it is the lowest profile button - but it is so huge it sticks out from her belly over a half an inch. very frustrating. I will let you know how that goes!
Thank you ALL for your continued support, love, & prayers!!!

I'm running the Disney Princess Half Marathon......now stop laughing and read this post ;)

Kristin, me, and Emilie - getting ready for our snow angels :)
"psyching" ourselves up!
snow angels for our Rett Angel Brooklyn
silliness - we gotta be crazy to be doing snow angels in shorts and to be attempting this half marathon!
what we will not do to raise money for Rett Syndrome!
Since the womb Kristin and I have been there for each other through first kisses and boyfriend break ups, college choices and childbirth, marriage and even divorce – she is my rock. It is only fitting that we take on the HUGE challenge of our first ever half marathon….TOGETHER.

Since Brooklyn’s daily life is a constant challenge for her, we decided to challenge ourselves by signing up to run the Disney Princess Half Marathon on February 26th, 2012 on the Girl Power 2 Cure Rett Team. (oh and we talked our friend Emilie in to it too!) Keep in mind….we have not run since junior high track! But we are running for Rett!

Rett Syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. Rett syndrome was REVERSED in mice in 2007! REVERSED! When the Rett research mice got the right protein levels in their brains, they went from cowering in the corner, shaking with seizures, to running around normally with their fellow mice within in few weeks.

I wish that at the end of the race, instead of a finisher’s medal, they would tell me a cure has been found. But until that day (which is VERY close) I will continue to raise money for research as a cure is possible in Brooklyn’s lifetime.

Please consider sponsoring me as I attempt to conquer ALL 13.1 miles in honor of Brooklyn’s struggle with Rett Syndrome.

To make a donation please click visit: http://www.firstgiving.com/fundraiser/brooklyn/princess-run

If you would like to learn more about becoming a corporate sponsor please visit: http://www.girlpower2cure.org/run/sponsor (please let me know if you decide to sponsor our team, as each sponsorship counts towards my fundraising goal!)

Hugs,
Kelly