Wednesday, January 30, 2013

Jan 30

For those who look for regular posts, sorry for the gap.  It has been a month filled with ups and downs, but just in the past week or so the balance is changing for the better.   This past weekend I heard Clay and Grace upstairs playing together, and laughing.  It was the best noise I have heard in months. 

We had two bad weeks recently where Clay was struggling with weakness, dizziness and loss of balance.  The doctors attributed it to the syrinx in his spine.  We met with the neurosurgeon at Children's in case emergency surgery became necessary.  Fortunately (I don't get to use that word too often), the symptoms disappeared without any medical intervention.  Mostly the doctors just shake their heads, as Clay is truly "an N of 1" to recall the old math equations (n=1).  He has so much going on in his little body, and it is seemingly impossible to connect the dots, even for the most experienced doctors.  It reminds me of some version of the joke "how many doctors does it take to change a light bulb...?" If I see 3 doctors to figure out what is causing Clay's problems, I usually get 3 different responses.  Another complication was just added to the puzzle --  a newly detected heart murmur, which was confirmed yesterday with an echo-cardiogram.  Apparently Clay has a mitral valve defect, which has recently worsened.  So we add cardiology to our list of doctors, and we add another appointment to our calendar, and another concern to monitor. 

Now for the good.  Clay is feeling more upbeat about life again and some of his old spirit is back. He has learned all 26 letters of the alphabet in Braille and they celebrated this accomplishment at school with a pizza party.  If you have ever looked at the Braille alphabet you will understand how difficult this is -- each letter is represented by some formation of raised dots in a grid of 6 cells.   Each week he enjoys a private swimming lesson in a beautiful, quiet spot, (thank you Maggie!), usually accompanied by just-baked chocolate chip cookies.  Clay loves the pool, as he feels freer and more familiar in water.  Last weekend, Clay attended a friends bowling birthday party.  And, on Monday we went ice-skating!  These activities might seem like small steps, but for us they represent a willingness to engage with the world again. 

Physically, Clay is feeling good. The medication is far easier on him than any others in the past, and swallowing pills is a breeze compared to an IV.  He has been dilligent in doing daily facial exercises, and some of his facial muscles are starting to recover. 

The next MRI is scheduled for February 15.  Please pray for Clay that this MRI will show the tumors are responding and are smaller in size.

-- Mary