Monday, March 24, 2014

3 More Months

The results of the MRI were stable, with some discussion about increased enhancement on a few spots. Reading MRIs, we now know, is more of an art than you might imagine.  But it is more tense than normal when you are on a clinical trial where the rules are very exact.  Regardless, Clay was cleared to stay on the trial, and so we march forward another 3 months until the next MRI.  His heart test was also stable.  Three more months and school will be out (maybe, unless we get another snow storm).  We have a lot of work to do to prepare Clay for third grade, when reading becomes much more important to keeping up in school.  But we will get there! Thanks for checking in.

Friday, March 7, 2014

Another MRI Ahead

Time is marching on and we are in month 18 of the clinical trial. Next Saturday, March 15, Clay will have a MRI.  On Tuesday he will have an echogram of his heart to make sure the pills are not doing any damage.  Please keep him in your thoughts and prayers for both of these tests, so he can stay on the medicine and finish up 2nd grade.  A bit of good news is that last month we had a full audiology exam done, and his hearing is perfect.  I was very worried since he has had regular MRIs since he was 3, and they are extremely loud exams.  From now on he will be armed with heavy duty ear headsets during the exam to protect his hearing.

Clay has been working hard at learning to read and write in braille.  He is now spending two hours a day in school on this task, and he is making good progress.  I am so proud of him, and it is amazing to watch him feel the pages of a book and make words and sentences out of the braille dots.  He is also doing well in math, also learning to do this in braille, and he is working on the same second grade material as his peers.  It is our hope that in third grade he will only be pulled out for reading and braille, but will do math with his regular class.  The Smartbrailler makes this integration into the regular classroom much easier. For now the school is using our brailler, but we hope they will provide him with one next fall. 

As part of his lessons he has vocabulary words to learn to spell each week.  This past week's words included "fate." He asked me, "Mom, what is fate?"
"Well," I explained, "it is what is most likely going to happen in the future."
"Oh, I get it, " he said, "like: It is my fate to get singing cards."
"Right," I said, happy for this new phenomenon in the greeting card business.  And, thankful for a simple definition for a difficult concept.