DU2C 2011 - Team Brooklyn!!

Team Brooklyn is THRILLED to join GP2C in our fourth year of Dress Up 2 Cure!!
We have again set our goal at $10,000 which I know is a HUGE amount. Each year I hesitate to set this large of a goal and each year my friends and family (and heck, even total strangers) ALWAYS come through for us!

The truth is, I can't set a price on getting my daughter back. Lets face it, research is expensive and without research and organizations like Girl Power 2 Cure Brooklyn might be "trapped" in her body forever!

SHE DOES NOT HAVE TO BE! Most of you know that in 2007 Rett Syndrome was REVERSED in an animal model! Now in 2011, researchers all over the world are working daily to transfer those results into viable treatments and a CURE for our girls.

There are hopes that within five to ten years we will have our cure! However, organizations like GP2C and these researchers need our support and that is why we have joined forces with GP2C!!

PLEASE, without your support we will not reach our goal, imagine in 10 years Brooklyn will be fifteen. What I wouldn't give to have a CURED little girl headed into high school!

To make a donation to our team: http://www.firstgiving.com/dress-up-2-cure-april-2011

Our EEG Experience

Monday morning we were at the hospital BRIGHT and EARLY for Brooklyn's 24 hour video EEG. Of course with all of the snow and ice our typical 30 minute trip was an hour but we made it safely!
Brooklyn has been having some "vacant" spells - I am pretty sure that it is just "a Rett thing" but we want to be sure. She has had some at school that I think might actually be some breath holding episodes but of course when a child is not breathing and the lips turn blue it tends to worry people! Can't say I blame them!
So, now the EEG is done and so we wait.....will let you know when we get the results. Until then here are some pics of our experience.

She was ALL smiles once they were done messing with her and she finally had her "princess crown" on.She actually slept quite a bit. I think she was a little bit stressed, plus turns out she was getting sick :(
Here we had 3 more hours to go -
The CRAZY hair after everything was off!
After 30 hours in the hospital she was OVER IT!

Then the REAL fun.....getting all that goopy glue out of her long, beautiful hair!
We survived the experience and pray that our results show NO seizure activity. Rett Syndrome tortures her poor little body enough as it is we really hate to add this to the list too. Thank you all for your encouragement through this process, you all are great!

Trip to New York!

These pictures/video include three SUPER inspiring women that I am so very thankful and proud to call my friends. Terri, Ingrid, & Steph - thanks for the AMAZING weekend!
Rett Syndrome - with women like this fighting you.....you do not stand a chance!!!
(Thanks to Ingrid for putting this great video together - YOU ROCK!)

post # 1001

At the beginning of my blogging life...... I just realized the last post that I typed was my 1,000th blog entry. WOW! What a journey it has been for sure! Thank you to ALL of you you have become my online family - without your love and support, this road I am on would be a whole lot tougher!

I chose this picture for the post because this was sort of the beginning of my loss....this is the last photo I have of Brooklyn feeding herself - before Rett Syndrome attacked our world. I suppose Rett Syndrome is the reason I began this blog - a form of therapy for me in a way. It has become so much more for sure. I have be introduced to amazing people via this blog - some in the Rett world, now the Down Syndrome world, others within the special needs community and also there are just "those people" who stumbled across my blog almost on accident but have made such an impression on my life. SO....thank you - to all of you who read my blog and support me daily, those two little words in no way express my gratitude for sure but know that if you are reading this, than chances are you are one of those people - and I love you!

Dress Up 2 Cure 2011

I am looking for 11 schools nationwide to be a part of Team Brooklyn in this year's 2011 Dress Up 2 Cure Campaign! Are you a teacher, principal, or even a mom that is willing to ask your child's school to participate? Leave me comment and I will get back in touch with you! It is a SUPER fun day - so come on.....help me get silly, spread hope, and cure Rett Syndrome!
To read a little more about how your school can get involved: http://www.dressup2cure.org/schools-2011.html

(we are looking for schools to host a day throughout April!)

Brooklyn was PUMPED for her Valentine's Party in Kindergarten today - she even woke up EARLY! Which is NOT like her on a school day! She used her stamp to sign all the valentines and took in Miss Weber a box of Hershey chocolates:)

Homemade Valentine's Ornaments

Grammy had the GREAT idea to make dough ornaments for Brooklyn's tree. Brooklyn was PSYCHED for this project! She helped with every step of the process!

and was pretty proud of herself!

She wanted pink -i think she was not sure that this red was gonna be pink!

but it was ;)

rollin out the dough

she picked out which cookie cutters to use

After letting them dry for what seemed like forever...Sarah and Lauren helped her decorate them all yesterday afternoon.

Grammy bought all kinds of great things to stick on them!

She helped the girls pick out the perfect place to hang each one!

The tree looks better than ever now!

Brooklyn is proud of her job well done too!

I'll Fly

Canadian gospel singer, Dana Marie, has a special little friend at church. Her name is Anna and she is just three years old. Anna cannot run, skip, climb, or even speak. She is "trapped" inside a body that will not work. She is trapped by Rett Syndrome, just like my Brooklyn.

Dana Marie wants to tell Anna's story to the world. The third track on her debut album, I'll Fly, speaks from Anna's point of view....the song is nothing short of AMAZING. I downloaded it and can't stop listening. As I listen, it is like Brooklyn is singing this song to me.

The song is only 99 cents to download and I promise you will not be disappointed - in fact you WILL be inspired! Also, Dana Marie will be donating 50% of the proceeds from the sale of I'll Fly to Girl Power 2 Cure through THIS LINK on the Gp2C website!

Download it today!

Writing Workshop in Kindergarten

Ms. Weber has started Writer's Workshop in her kindergarten class. I have to admit....I was a bit nervous to see how Brooklyn would be able to participate. Well, again leave it to Ms. Weber to adapt! She asked me for a list of possible topics (and gathered some of her own from this blog.) She then gave Brooklyn choices of what she wanted to write about (via eye gaze.) She chose horses.
She then cut out words and statements that could be read to Brooklyn for her to create her sentances. She also provided pictures for Brooklyn to pick from to use in her book. Brooklyn's aide helped her with her choices and we ended up with this FANTASTIC book!