One issue that comes along with Rett Syndrome are orthopedic issues. For those of you who follow this blog – you have seen the broken bones, hip reconstruction, and scoliosis however it even affects her wrists. She struggles with wrist contractures, which can happen from the years of constant “hand wringing” also – just being in […]
Let that sink in for a second. How much hope does this statement give you? For me it is overwhelming! I can’t imagine that there are many people that read this blog whose life has not been touched by someone who SUFFERS from one of these disorders. Researchers refer to Rett Syndrome as a “Pandora’s […]
Videos from 2008
I am really not for sure why I decided to check out my old youtube channel but I did, and I cried. As far as an awareness post today…..well…..as a mother it heartbreaking to watch your daughter work so hard to gain skills and then again to lose skills. I long to have my sweet […]
Warning: I was MAD at Rett this morning.
I love that there is a month set aside for Awareness of Rett Syndrome but to be honest every single day I am very VERY aware of Rett and what it has taken away from my daughter. From the time she wakes up until the time she closes those beautiful eyes to go to sleep each […]
Some of you reading this blog know ALL ABOUT Rett Syndrome but some of you might be new here. Maybe you are a Down Syndrome/Autism mom and are stopping by because of my son Boston? Well – since you are here I would LOVE for you to learn a little about my daughter Brooklyn and […]
I remember sitting at my dining room table hearing the news that sweet Livvy had passed unexpectedly in her sleep. She was the first little girl that had died since we had received our diagnosis. I never had the chance to meet Livvy and still have not had the opportunity to meet her amazing mamma, […]
Awareness Month Can Start Now!
These little cards arrived JUST in time for Rett Syndrome and Down Syndrome awareness month!!! In the past I’ve carried around two individual awareness cards – one for each kiddo. I had purple cards for Brooklyn and separate blue cards for Boston. Now I have ONE card of awesome! Brookies info on one side and […]
WARNING: Awareness is about to happen!
It is ALMOST October. Which means it is ALMOST Down Syndrome Awareness Month AND Rett Syndrome Awareness Month!!! I plan on blogging EVERY SINGLE DAY. You will hear great facts and stories, you will get updates on research and of course see super cute pictures of my kids like this: It is my month […]
Fall, Fun, & Friendship
School has been in session for over a month now an I am finally getting it together enough to start having friends over after school! I promised Brooklyn I would be better at getting friends together outside of school this year. She was PUMPED to have her friend Audrey over. When asked her opinion on […]
Inclusion ROCKS: Friends ROCK!
I can’t believe that Brooklyn has been in school three weeks and I have not done a single blog post about 5th grade yet. SHE IS LOVING IT!!! So far my favorite story was last week. When I picked her up her afternoon 1:1 aide shared a story with me. She said that two of […]