NEW BLOG ADDRESS

Hey Everybody......
I have combined the kiddos blogs - be sure to stop over to www.specialmommyx2.com and keep up with us there :)
Love & Hugs,
Kelly

Garden of Hope for Rett Syndrome

Garden of Hope for Rett Syndrome from Girl Power 2 Cure on Vimeo.
Hey Blog readers.....have you been wondering how YOU might be able to get involved with raising some money for Rett Syndrome research (with little work for you!?)  THIS is your chance!
The Garden of Hope project is SO easy! Watch the video then click HERE to order your paper flowers!

We are SOOOOO ready for SPRING around here!We LOVE it when we can get outside for some fresh air....plus my walk to the mail box is SO much better when Brookie can join me!

Brooklyn loves watching her cousin Jackson play basketball!

KPC Family Magazine article

I wanted to share our magazine cover photo and article with all of you! I seriously have two of the cutest kids ever, don't ya think?!?! Click HERE to read the article!

The Disney Princess 1/2 Marathon (running for Rett Syndrome!)

I DID IT!!! I completed my very first 1/2 Marathon!!! I have to admit, I was not sure I could tackle this goal - but when Girl Power 2 Cure decided to have a team and raise money (and LOTS of awareness for Rett Syndrome - well.....that was the motivation I needed!)

Here I am with my official runner number :)

'Team Brooklyn" at 4:00 am waiting to head to the starting line!

Nikki designed this AWESOME shirt that she wore to dinner our first night - LOVE it!

Kristin and I stuck by each other the entire race :)

I was SO thankful to have fellow Rett mommie Kristy & Tina running with us too - thanks COACH Tina :)

This was the sign at our half way point - the song "Stronger"was also playing :)

OUR inspiration for running!

OK....I was A LITTLE proud of myself!

Ingrid and I with our medals :)

an up close look

SO much GIRL POWER in one photo:)

Brooklyn, the TRUE medal winner - I love this girlie!!

So, will I do it again?
I think I just might :) and YOU can too! Girl Power 2 Cure is already signing up runners to join our team for the 2013 Disney Princess Race! Just Click HERE to have your name and email added so that you can keep up with all of the latest 2013 race day news! 
I honestly do not have the words to describe what this weekend meant to me - we educated thousands of people about Rett Syndrome AND I proved to myself that with the right motivation - I CAN DO just about anything! SO I ran.....I ran because my daughter can't!

the famous purple card ;)

GUESS WHO has one of these amazing purple cards????
Dr. OZ!
A friend and fellow Rett mommy met him last week while he was taping a news segment and she gave give him one of her daughter's cards and one of Brooklyn's! THEN.....he asked for a phone number of someone at Girl Power 2 Cure and she happened to have my cell number in her contacts :)
At the very least, Dr. Oz was introduced to Rett Syndrome.....and who knows - maybe he will actually call! That would be A.W.E.S.O.M.E!

Friends; my daughter has some of the best!

Often as a special needs mom it is not the feeding tube, seizures, wheelchairs and such that I spend my time worrying about. It is the other "life" things like will my daughter grow up having close girlfriends like I did. Then....I get a message from a mom of one of Brookie's classmates letting me know that her daughter bought a doll today "because it looks like Brooklyn" and that they have lots in common like "Brooklyn likes pink and I like pink, and Brooklyn likes purple and I like purple." Yep - I LOVE that little girls at this age only need "the small things" in common to be the best of friends. Her mom also shared this drawing that M drew of the two of them.
Ahhhhh......my heart if full of happiness right now!

Surgery Date

Many of you remember me posting THIS picture of Brooklyn's hip. Well - surgery has been scheduled.
We will be over in Chicago on April 3rd for the day doing pre-op, registration, and labs then will go back on April 11th for the actual hip reconstruction and muscle lengthening surgery. I am not sure why actually having the date on the calendar is hitting me so hard. We have been thinking about it for months now and knew it was coming. I guess this is just another one of those "I hate what Rett Syndrome puts Brooklyn through" moments. I should also say that there is a chance that surgery will be postponed if her seizures are not under control.
We have been battling them a lot lately - we are not on our "therapeutic level" of Valproic Acid and hope that Brooklyn will be seizure free SOON. My poor baby has had a rough few months and to top it off she has been home since since Friday :( and she LOVES school!
Please keep the prayers coming for me and the kiddos. I feel a teeny bit stressed right now.

My reason to run

I have lots and lots of pictures to share of my 1/2 marathon weekend. I am still recovering so that post will have to wait. I do however want to post this one now. Because it is my favorite one. Brooklyn is the reason I participated on Team GP2C for the Disney Princess 1/2 marathon. BELIEVE ME- I am NOT a runner (anyone who knows me can confirm this fact!) In fact - until this weekend it you were to ask me if I could do a 1/2 marathon my response would be "no way, I CAN'T do it!"
But then I think of Brooklyn and everything that she deals with on a daily basis as she lives with (and battles with) because of Rett Syndrome and it motivated me - it motivated me to do it because I have legs that CAN run. SO I ran for Brooklyn and for all the girls (and a few boys!) that have Rett. Thank you Brooklyn - for your inspiration! I pray that someday soon YOU will be free from Rett Syndrome and running with me!

A birthday blessing

Do you know how sometime you come across a kid that you know is going to make a difference in this word? You know....a young man that has so much heart, so much compassion, so much awesomeness that it actually makes YOU look at what you are doing and want to do more? Well....Mason is one of those kiddos. He was Brooklyn's BIGGEST fan as she was preparing for the special needs Christmas play (seeing it like 3 times I think!) He has always just "talked" to Brooklyn like he does any 6 year old - Rett Syndrome does not bother him - except for the fact that he WANTS it cured!
I got a text from his mom Amy saying that Mason was having his birthday party and had decided that instead of asking for gifts from his buddies - he wanted money to for Rett.....to help Brooklyn. It is not often a text makes me cry but this one did.
Amazing people like Mason and his mommy keep me going. Their lives are not daily affected by Rett Syndrome like mine but still - they help....always.
Mason - you are A.W.E.S.O.M.E. - HAPPY Birthday. Thank you for making YOUR special day - special for US too!
His donation???? $88.00 - HOW COOL IS THAT!!!???

A little Girl Power

Brookie and I were sporting our Girl Power shirts yesterday. I had the opportunity to hand out flyers at my church to let people know about Rett Syndrome and my upcoming 1/2 marathon. I always LOVE when I have to opportunity to educate others - and if I can raise some funds too....well, that is an added bonus! I want to thank everyone at SonLight Community Church and my pastor Jason Rains!
(seriously, how cute is Brookie?!?!)

Bdubs!!!

JOIN US next Wednesday at Buffalo Wild Wings!!

Click on the picture to print out the flyer to take with you on Wednesday!

Professor Adrian Bird

Professor Adrian Bird needs no introduction to anyone who follows Rett Syndrome research. His list of accomplishments includes discovering the MeCP2 protein, developing multiple animal models for the disease and authoring the seminal 2007 Science paper...
Prof. Bird was a guest of honor at the Reverse Rett London event and made the following remarks. He touches on a number of important issues. I encourage you to listen and share.

Prof. Adrian Bird's Speech at Reverse Rett London event from RSRT on Vimeo.

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