Friday, October 28, 2011
I will be running the upcoming Boston Marathon to raise money and awareness for Rett Syndrome. Here is the link to my fundraising page where you can see a short video that tells Meredith's story and allows you the opportunity to donate if you wish. Thank you so much!!
Tuesday, October 25, 2011
As a long-time Apple fan, I instantly fell in love with the ipad as a toy that allowed me to cruise around online, read and play games. I had no idea when I first got it how beneficial it could potentially be for Meredith. We are beginning to explore various apps that hopefully will one day help Meredith communicate. Therapists are finding this to be an amazing tool for tapping into the minds of non-verbal kids. We are starting with very simple concepts - when she touches the screen, something happens. Here is an interesting 60 Minutes segment that shows how it works. I love the bit about the little boy who they discovered loved opera. Who knew!? These kids have ideas and thoughts and feelings in there - it's just a matter of getting them out.
Tuesday, October 18, 2011
Today school sent home a few pictures from Inclusion Gym Class. MerBear made Dad proud today as she played soccer for the first time! There are a few little girls in the class that know how much Meredith likes things that sparkle or shine. So on the days they know they will see her, they wear shirts with sparkles. I thought that was just about the cutest thing ever. Here's a pic of Mer with one of her buddies and with her gym teacher.
Saturday, October 15, 2011
Today we attended our first official Rett Syndrome Event - the Blue Sky Event at Harvard Medical in Boston. Greg is in China for work but Meredith and I went and we brought Grandma too! It was a great day and we had the opportunity to meet many other Massachusetts Rett families. Dr. Khwaja was there as well as several of the researchers working on finding a cure. Each of the children climbed the stairs to symbolize their strength and perseverance. After the kids climbed, Dr. Khwaja and the researchers climbed too. It was an amazing day. The second picture is Meredith and I with my marathon buddy Jeanne and her beautiful daughter Charlotte.
Friday, October 14, 2011
Again - this is Typical Rett (not Variant), but great exposure for Rett Syndrome in general. Meredith's kind of Rett is distinguished from this kind because she never had the period of normal development these parents describe and her mutation is to the FOXG1 gene, not MECP2.
Kind of sciency, but if you are interested in hearing someone who knows what they are talking about explain the experiment, here it is! This explains the very exciting experiment that was done where Dr. Bird was able to reverse the sypmtoms of Rett Syndrome in mice. MECP2 is the gene linked to Typical Rett. But this science is still exciting for kids with a FOXG1 mutation (Atypical Rett) because the findings indicate that a similar approach could be taken with the FOXG1 gene.
Saturday, October 8, 2011
This week Meredith got to trial a gait trainer at Children's Hospital. It's kind of like a walker with lots of support. We ordered her one and it will take about 3 months to arrive - we are so excited! It's a Rifton Pacer like this one, but a newer looking model and a snazzy lime green color.
There is a seat and a snug support around her torso. The idea is to get her her legs to start making the walking motion. Hopefully with time, she'll learn to tool around in her little walker on her own. It was so nice to see her in the standing position and still be able to move her around her legs. Also, this is something we can use barefoot, which is just nice. No AFO's and sneakers - au natural : ) She seemed to like having her feet on the ground and overall was very happy being in it. She kept kicking her left leg out like a little kickstand and seemed to like putting her hand on the handle bar. We weren't sure a gait trainer would offer Meredith enough support, I pictured her being too floppy. But seeing her in this was really encouraging - think she might really take to this! She loves to move around, she just has no control over her movements. So this gives her the stability she needs while still allowing her to move. It was awesome and we can't wait for her's to arrive.