Sunday, July 20, 2014

Summer Update

Summer is passing too quickly. Clay has been busy and has had a few "firsts" recently.  Right after school let out he attended a week of summer camp at Columbia Lighthouse, in Silver Spring.  Each morning a driver picked him up and returned him home at the end of the day.  There were about 20 kids at the camp.  This is the first time he has attended camp for children with visual impairments, and I think overall it was a good experience for him.  For the final day of camp they performed skits, and of course Clay chose to tell jokes.  Besides swimming, they did adapted sports such as beep-ball (like baseball) and practiced their navigation/cane skills. 

Since then he has been doing twice a week swim lessons, and has made great progress.  He recently passed the "swim test" at our pool.  Here he is with his swim teacher Hannah, celebrating his feat.

Clay is also doing braille lessons a few days a week, and surprisingly is enjoying this as well.  He recently cleared out a shelf in his room for his braille books at his own request.  As I am also taking braille, we are good study buddies and sometimes I have to call him to help me with the braille page I am trying to translate.

A real treat was a recent Nationals ballgame with our friend Pat Leahy.  We got down onto the field to watch batting practice, and Clay and Grace enjoyed getting signatures from several of the players.  Clay's highlight was  having Ian Desmond give him his bat, pine tar and all.  Here is a shot of us down on the field.  Ian is 6'8" which is why I only reach his shoulder.  Grace is very into baseball these days so she is able to give Clay blow by blow details on what is happening on the field. 
Phase 2 of our research project at Johns Hopkins is underway.  A huge thank you to our friends who have helped move this along.  Dr. Raabe is pulling experts from several areas to focus on low grade gliomas, and his hope is to have a center at Hopkins dedicated purely to Clay's disease type.  We are not there yet, but hopeful that this will move forward in the future. 

We are vacationing close to Boston this August, and I will be able to get to my classes more easily, while we all enjoy some down time.  Clay's next MRI is in September, and then we face very difficult discussion on next steps.  Please keep Clay in your thoughts and prayers so he might have a good year as he starts 3rd grade this Fall.

1 comment:

  1. We hope you are enjoying New England and some quality family time. Our thoughts and prayers are with all of you, as always.
    The Jacksons