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Saturday, August 20, 2011

What's Jack been up too?

School has started back and I am so glad!!! Jack and I enjoy the quiet! I have to say I don't miss the fussing and fighting between Elizabeth and Wesley. I miss the easy days of no real schedule though. We have traded all of that for a quiet house and homework. Oh well...
Elizabeth started 5th grade and Wesley started 3rd grade. John and I along with Jack's doctors decided it was best for Jack to go homebound for school. Homebound means that Jackson is too sick to attend school. We thought with his new onset of dropping sats while sleeping during seizure, increase of frequency and his WEAK immune system that it is best for Jack to have the teacher and school therapists come to him. I have been taking him every Monday to physical therapy at LeBonheur Germantown rehab. We have a great therapist that has been helping Jackson with positioning, stretching, home program, and equipment evaluations. A new stander has been ordered for Jack. The stander is a piece of positioning equipment that will help him stand up. It is important for his hips, bones, muscles and internal organ position. As soon as the school system starts sending the therapists to the house Jack will be put on consultation at LeBonheur Germantown rehab. We will just have to visit them once every three months. Charlottte is still coming from No Place Like Home to help take care of Jack. I think she is in love with Jack. She has been a fantastic help. Elizabeth is taking ballett and jazz this year. Wesley is playing baseball. Wesley usually has two games a week. We have wonderfully, crazy schedule.

Mitochondrial disease awareness week is September 18-24. I just planned Mito night at McAlister's Millington. It's going to be Friday, September 23, 2011 5pm-9pm. Even if you don't live near Jack, you can still help Jack and other kids just like him, by investigating opportunities in your community that may be having events. I am super excited about raising awareness and fundraising for a cure. Thank you so much for your continued support. Your dollars are funding research that may one day offer a treatment for mito. I am so, so, so, so, grateful!! Sticking together is the only way to beat this disease. Thanks so much for all you have done for Jackson!