Girl Power 2 Cure

Coloring eggs was a bit more fun this year ;)

Coloring eggs was a bit more fun this year ;)

It is that time of year – to get out all of the egg decorating kits. This year we thought it would be a little more fun for Brooklyn to have a few friends over to decorate eggs (I think we were right!) Thank goodness my mom hits the clearance bins each year – we […]

Ragnar 4 Rett

Ragnar 4 Rett

These six women did an amazing thing this weekend. They ran – and when I say ran, I mean they ran 195 miles as part of the Southern California Ragnar Relay They were one of over 700 teams that competed. However, it gets MORE intense – most teams have twelve members on their team – […]

Lives are changed because of Universities…..especially THIS Univeristy.

I remember when we received our diagnosis of Rett Syndrome for Brooklyn. I was devastated to say the least. I had so many fears. How long would she live? What kind of life would she have? Will she miss out on everything all the little girls her age get to do? Will she get to […]

Brooklyn Age 2 = year of Rett Syndrome diagnosis.

How to tell a family their daughter has Rett Syndrome: A message to all doctors and genetic counselors

It is Down Syndrome Awareness month and I read a brilliant post about “How to Deliver A Down Syndrome Diagnosis the right way” Which, by the way, I encourage everyone to read. However, this got me thinking….maybe a letter also needs to be written on “How to tell a family that their daughter has Rett […]

Rett Syndrome Awareness Month: Miss Brooke

Rett Syndrome Awareness Month: Miss Brooke

Miss Brooke is Brooklyn’s aide this year in third grade and yesterday she got married. It was such a special day! There were lots of beautiful pictures taken (I can’t wait to see all the love that her photographer captured) but this one above that I took prior to the ceremony is by far one […]

Blenderized diet

Blenderized diet

Brookie got her feeding tube July of 2011- she was 6. This was something I feared from the very beginning of our Rett Syndrome journey (right, Carrie Akins?!?) Today as I think back, I am not sure why I feared a feeding tube so much, but it terrified me. ¬†Unfortunately, her chewing got worse and […]

Rockin' For Rett!!

Rockin’ For Rett!!

Hey everyone… I wanted to remind you that our FIFTH annual Rockin’ For Rett is coming up at the end of the month on Saturday September 28th. It is at Piggy’s Brew Pub and the fun starts at 6 pm! Admission is just $10 and all the admission proceeds go directly to our cause! There […]

A picture from PJ!!??!!

A picture from PJ!!??!!

Every once in awhile something simple like a walk to the mail box can change your day completely!! Today was one of those days!! Brooklyn got a SUPER special, super awesome surprise in the mail today from one of her friends, Courtney. (Courtney, I hope that you are LOVING reading about yourself on my blog!!!) […]

Team GP2C - Disney Princess 1/2 Marathon

Team GP2C – Disney Princess 1/2 Marathon

It truly is hard to even put into words the emotions of last weekend….but before I start getting hate mail for not blogging about the weekend…here it goes….. My partner in crime for the weekend – Ingrid Harding. We do not get to see each other much throughout the year but you can bet we […]

Girl Power 2 Cure

I (of course) hate Rett Syndrome and all that it has taken away from my sweet daughter but I absolutely adore the amazing people that have come into my world and become family because of Rett. I am so honored to be a part of the Girl Power 2 Cure organization and that in some […]