Archive for 8 June 2010
8 June 2010
In the mean time the Chicago summer started. Warm temperatures almost every day with thunder storms, every now and then. Jasper is doing fine (of course given the circumstances we’re in). He eats well and although we suspect that his eyesight has further deteriorated, he is still watching his TV heroes, Dora and Boots on a daily basis. Unfortunately we can no longer ask him about what he still can(not) see .
Because we suspect that Jasper’s (in)ability to walk also has been caused by muscle tone, we are reviewing again the casting option that we brought up earlier. Jasper will receive casts around his feet and calves this week. After one week, they will redo it but stretch his feet slightly more. Eventually we hope that Jasper can easily stand on the floor with his feet flat instead of the toe-walking that he currently does.
Jasper has only three weeks of vacation this Summer. That’s a good thing since he certainly needs his regular portion of therapy that he gets at school! Jeroen, to the contrary has almost 3 months of Summer break. After that, he will move into the 2nd grade on the Oscar Mayer school. Apart from enjoying the Chicago Summer, we’ll also try to have a little vacation somewhere in the Midwest. Next to that, Jeroen and I will probably visit the Netherlands for a week or so in August. We won’t take Jasper along as we do not unnecessary want to trigger a premature loss of skills by some self induced ‘stressful event’.
Everything is still moving forward in the world of science. A gene therapy study with the Beverly Davidson lab that we fund is almost finished. The preliminary results look promising. We’re also still working on the drug repurposing study. We expect to have results at the end of this month.
Fundraising remains a bit slow but we are still doing nice things. We still have our action with the big Dutch travel organization and at the end of this month we are the theme in a large tennis tournament in the Netherlands. Furthermore, Jeroen’s old school in the Netherlands organized a fundraiser. That went also very well! A big thank you for the St. Dominicus school! Fundraising in the U.S. on the other hand looks like it will materialize again in the next few months.