Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, September 23, 2011

Decision time

We have finally decided which eye gaze communication device we are going to get for Abby.  We have had a brief trial of the Dynavox, a month with the Eco2, and couple of weeks with the Tobii.  It wasn't easy to get a test of all 3, but our SLP begged and pleaded until the rep. just let us borrow one.  The Dynavox was not a good fit for her at all.  I don't know if it was her glasses or just the device itself, but we couldn't get it to do much of anything while it was here.  She did great with the Eco2 and I really like the language system.  The Tobii is also nice.  It was easy to set up and calibrated to her very quickly.  There are lots of girls who are having success with both the Tobii and the Eco2, so I wanted to be sure that we got the one the Abby would be most successful with.  Finally, after much deliberation, we have decided to submit our paperwork for the Eco2.  Abby really did better with it than the others, and I think it will do everything that we need it to do for her.  I hope now that we have done the trials, the purchase will go smoothly.    

Sunday, September 18, 2011

Strollin' for a Cure 2011

What an amazing day!  We had the perfect weather for the strollathon again this year.  It was great to see all the families and their teams supporting our girls and our effort to fund research for Rett Syndrome.  Our treatment is coming!  It feels great that this fundraising could play a part in making RS the first treatable neurological disorder.  The Tri-State Strollathon is huge! I think they said there were over 50 teams participation this year.  It raised over $175,000 for IRSF.  Isn't that crazy?  When all the offline amounts are totaled, we will have surpassed our $5,000 goal again this year!  I can't thank those of you who support Team Abby enough, whether you participated in the walk or made a donation to our team. You rock.  It means so much to our family to have so much support!  Here's a few photos of Team Abby.  They make the 2 hour drive to Cincinnati every year to stroll for a cure:)  Go Team Abby!

Wes and his mom, or as she is known by the kids, Nonnie

Uncle Joe and Aunt Victoria

Grandpa and Nanna

Julie (with baby Emily on the way) and Brooke

 Aunt Rose and Aunt Cheryl


Sunday, September 11, 2011

Cool Kids!

Fundraising is not my favorite thing, to say the least.  I don't like asking people for money.  If those of us with kids with Rett Syndrome could fund the research needed to save our children ourselves, we would.....gladly.  It's just too expensive for even this very committed community.  We need the support of lots of people. It's just that simple.  Asking people to give up their hard earned money isn't an easy task, though. Thankfully, this year's fundraiser reminds me again how blessed we are to have such amazingly generous people in our lives.

There are several donations to Abby's fundraising page from complete strangers.  Maybe these are families who follow her blog?  Maybe they are in the same line of work as Wes and have stumbled upon his blog with her link?  Again, amazing generosity! We've had donations from old friend and neighbors.  And then there are our family and friends.  Most importantly, they support us by loving and accepting Abby.  We know they celebrate her accomplishments and are praying for a cure.  They participate in the strollathon every year and give to her cause.  We have been blessed with a very supportive family.  Just this week, Abby's cousin, Emily, celebrated her birthday.  Instead of receiving gifts at her party, she asked her friends to make donations to Team Abby.  Wow.  How cool is that?  Her birthday party raised over $300 for Team Abby! I hope Abby makes friends in school who are just as sweet as these young ladies!

Thanks Emily and all the CAL girls!!