Thanksgiving

Our medical odyssey with Kyle has been like a speed-dating contest with a line of doctors winding around the block waiting to connect or dispassionately go through the motions. The rapid round robin process produces rapid relativity and it becomes natural to compare experiences from one doctor to the next. Acute competence has usually been paired with sincere kindness, but there are exceptions…

Given that it’s Thanks, um, giving, today’s medical review will focus on two extraordinary women who are literally saving Kyle’s life. The two doctors, Madelena Martin and Christy Stine are a Metabolic Geneticist and Neurologist respectively at the UMass Medical Center in Worcester, MA.

Yeah, they order a great deal of bloodwork that terrifies my boy, but with it, they are getting at the source of Kyle’s maladies. Together these women are an amazing team and just love Kyle. On our first visit, they spent the large part of 3 1/2 hours with us during a scheduled 2 hour appointment. (Note to self: Never again bitch when doctors are running late…) Tests reveal Mr. Daley has elevated levels of homocystine in his system, but we haven’t yet nailed down why. A regimen of custom B6, B12 and Folic Acid supplements plus a compound labeled cystadane is prescribed to lower these dangerous levels. While Dr. Martin has focused on the metabolics, Dr. Stine is doing the uh, legwork on what she’s theorized as increasing spasticity in Kyle that is inhibiting his walking.

Yesterday during another consultation she legibly wrote a script for Baclofen to ease the spasticity and possibly improve Kyle’s urinary difficulties. Later, Kyle, his mom and I thanked this wonderful team for their work and compassion treating Kyle, then waited anxiously for the feared Phlebotomy. Oh, did I mention yesterday was Dr. Stine’s day off, but she came in to see Kyle? Yeah. Unbelievable. Even more so was when she came back into the room to help calm Kyle during the prickly procedure! What doctor does that? Well, one who Kyle might describe a “practically perfect.” Late last night, after a couple doses of Baclofen, I could see improvement. As Kyle sat on his bed, Megan appeared to say good night. “Get up and give your sister a hug and a kiss,” I requested. Kyle rose from his bed unaided and walked gingerly to his sister to lay one on her…

Put me down for thoroughly thankful.