Wednesday, September 11, 2013

Back to School

First, thank you to everyone who spent days voting, trying to vote, watching the "vote for Marty the SMARTbrailler" numbers like it was a Presidential election, e-mailing me to let me know you were voting, and being frustrated because Clay was stuck in 3rd!

Clay did not win the brailler, but there is an upside to this.  Perkins (manufacturer of the brailler) took my advice and is offering the brailler to the remaining 5 children at a $500 discount.  But, the most amazing thing is that the other families immediately went into "fundraising mode" and they have enough money raised to buy their children braillers.  One of the children's relatives reached out to me, and they are "paying it forward" to give Clay the extra money so he will also be getting a new brailler with the overflow funds courtesy of the kindness of strangers who are now "virtual" friends. 

School is off to a great start, and Clay is doing well carrying his backpack with the old, heavy brailler inside.  Once the SMART brailler arrives we will be able to get him a smaller bag, which will be a big help, particularly when he is trying to climb the bus stairs.

Clay had his monthly check up the day school started.  He is on his 12th month of pills, and he will enter into year 2 of the clinical trial next month after his MRI.  His doctors asked if we would like to stop the medication.  Of course I thought I heard them incorrectly.  It turns out they are required to ask if we would like to stop at the one year mark.  None of the four parents on the trial are choosing to stop, as each child is having a good response with very few side effects.  The great unknown and the potential reason for stopping is that this drug has never been testing on children Clay's age, so they have no idea what the long term side effects are.  Of course this is terrifying to me, but not as terrifying as going backwards to where Clay was before this medication pulled him out of the downward spiral he was on.  So we continue, and we hope and pray that his blonde hair is the only price he will pay for getting a second chance.