So…. it’s been quite a whirlwind lately. Boxes and Ikea runs and back and forth to Montefiore Children’s Hospital (me, thankfully not L)… the summer is slipping by.
But so many good things are on the horizon. Tomorrow is the big move. My dear friend Michael is orchestrating the move for me (and he’s handled my kitchen renovation as well). He’s been a godsend. And he’s packing us off for a few days so he can settle the apartment for us while we take a mini vacation to the burbs, courtesy of my cousin Miriam!!! How lucky are we?!
So, why have I been back and forth to the Children’s Hospital? Well… the first visit was to take a workshop with Lily’s new speech therapist who is specializes in teaching girls with Rett Syndrome. I knew she was kind of a rock star, but I really had no idea how much of a rock star until I took this workshop. Lily is going to be in such great hands. And she’ll be communicating with us (and I mean REALLY communicating) in no time at all.
The second trip to the hospital was to get trained on how to adminster testing to Lily via eye gaze tracking ‘games’. I was put in touch (via the rockstar speech therapist) with a neuroscience team at Cambridge University, in conjunction with the Einstein School of Medicine, who are working on cutting edge communication and cognition tools for infants and toddlers with language impairments. So, for the next few days, while we are on vacation, and then settling into our new home, I will be running code and taking time based on Lily’s interaction and interest in these games. Which means that I’m carting approximately $50,000 worth of machinery around. But Lily, and the machinery will be in good hands.
What they’re hoping is that the findings from Lily’s and other Rett sweeties results, the team can get further funding to expand their program. What I’m hoping is that Lily will sit still long enough to provide meaningful results!
Never a dull moment.