For all of my friends that are on facebook…. Please take a moment and vote for the Rett Syndrome Research Trust as part of the Chase Giving Campaign. We have to opportunity to win $250,000 for Rett Syndrome Research! Keep in mind that all of the charities in the TOP 10 will receive $100,00!! [...]
In the hospital….not the way we has hoped to spend our Labor Day weekend. Her left lower lung is affected. She is on IV antibiotics and receiving treatments with “The Vest” three times a day. Unfortunate she has been unable to keep her stats up on her own so we are on Oxygen too. We [...]
Brookie and I finally made it out on the boat with Kristin and Josh. It’s been so hot we just have not been able to go out on their boat. Heat can be a trigger for Brookies seizures so we just have to be careful :( Oh to not have Rett Syndrome dictate our fun…….
In February I joined Team GP2C and took part in my first 1/2 Marathon. It was the Disney Princess half marathon and we were running it in honor of all our girls with Rett Syndrome. About mile 10 of that race I told my sister to”NEVER let me do this again.” I was not prepared [...]
Prior to Brooklyn’s hip “going out” she was about 75-80% potty trained….I hate using the term “potty trained” when talking about my 7 year old – the sad/frustrating truth is, she was 100% trained and WE (every one of her care providers) were 75% (or less) trained. By that I mean WE missed her “sign” [...]
Today was a BIG day! Brooklyn sat all by herself in the middle of the floor three separate times today. This is the first time that Brooklyn has done this since her hip surgery – as you might imagine I am one super happy mommy tonight! Time and time again Brooklyn reminds me how tough [...]
Someone was a teeny bit happy to have some time in her “normal” chair with her abductor brace off! We head back to Shriners in 2 weeks to see how the healing is going. It’s been a LONG 8 weeks for her.
I have loved Brooklyn from the moment I found out that I was expecting and my definition of what love really means changed from the moment I held her in my arms. I knew that she was amazing from the start…..my little angel. Then, Five years ago today our worlds changed again. That was the [...]
Today was a BIG day….we loaded up in the car and went out to school to see some friends! Everyone was SO happy to see Brooklyn! Especially her buddy AJ We stopped by to see Aunt Kristin on her lunch break too! Can you tell from the smiles that she is SUPER happy to be [...]