Grace graduated 7th grade this week. She was very excited and we were relieved to have the school year come to an end. During the school year the amount of homework and the rigor of the 7th grade curriculum was frequently overwhelming. With Grace’s determination and the assistance of her teachers we pulled through. We owe a huge debt of gratitude to a wonderful group of teachers and professionals that form Grace’s support network.
Grace is now a year and 3 months out from her second surgery and while she is beyond the acute stage of her recovery we still have a long road to navigate. We are still unsure if Grace is seizure free as she remains on several medications. Every attempt to reduce her medicines has been met with complications. Grace still experiences headaches although it is difficult to say if these are seizure related or just the result of her surgery. Grace’s physical recovery has improved recently, but we still remain cautious as day to day her balance seems to vary.
Grace has a busy schedule this summer. Grace will be receiving occupational and physical therapy multiple times a week. Additionally she will have tutors twice a week to introduce next year’s curriculum, review key concepts, and improve her computational skills. Grace will also be in the pool working on her endurance as a honorary member of a local swim team. Grace’s love for the water is slowly returning.
This week Grace will be reading a story to a 4th grade class taught by one of her tutors at a nearby school system. Grace’s teachers and members of the community keep finding ways to keep her active and engaged. See the latest video on the TV Channel tab to watch Grace throw out the first pitch out at the championship game of the girl’s softball league. We are very appreciative for these opportunities and Grace enjoys participating.
We continue to plow ahead with our research initiative. We are working on a plan to hire a research coordinator whose initial focus will be to catalog all of the tissue and blood that is available for research at the various surgical institutions. Hopkins, UCLA and Boston Children’s will be the initial focus of this research. It appears now that the individual will be located at Johns Hopkins. This will be a major step forward in our efforts. Please speak to your doctors and surgeons and request that they get involved in this effort. We are also advancing our plans to form a patient registry. As discussed in previous blogs, a patient registry is essential to moving forward with research to find a cure. More will be forthcoming about the registry.
Please continue to support our efforts. Our research initiatives and efforts require funds. Please tell your friends, neurologists, doctors, teacher, contacts in the media, PTs, OTs, etc about our efforts. With your help we are making a difference! Happy Father’s Day.