Last week, Caleb had two different appointments with specialists at the Kennedy Krieger Institute. I was supposed to take him on Monday, but I was called-out in the middle of the night for work and still working hard well into the next afternoon. Luckily, Shane’s parents had a late afternoon flight so they were able to accompany Caleb and Shane up to Baltimore to meet with his genetic counseler. Caleb had some blood work tests back in February that all came back normal, so this was just a follow up appointment to discuss the results (ahem, 6 months later). The purpose of these tests was to determine a potential genetic etiology meaning an indicator that Caleb’s CP was the result of a genetic disorder. Luckily, everything came back fine however there is no test that can diagnose or rule out all possible genetic disorders but based on Caleb’s progress and his lack of any other health issues, we were given the all clear. The outcome of this appointment was “Caleb’s doing great, no follow-up needed!” Phew! One less doctor on our list!
A few days later, I took Caleb to see a different doctor in the movement clinic. We had seen this doctor 3 months ago when he told us that Caleb didn’t need Botox injections in his muscles. This was a follow-up to see if that status had changed. The appointment went really well and Caleb did his best to show off his walking skills in the small exam room. Based on his physical exam and my description of some of his other progress, it was determined that Caleb doesn’t need Botox injections once again. Not only that, but the doctor only wants to see him in 6 months, rather than 3. Pretty exciting stuff. It’s rewarding to know that the therapy and stretching that has become part of our every day life is really helping Caleb. It’s nice to leave the doctor after a good appointment like that. I feel like Caleb is making steady progress, albeit not quite as fast as last year, but progress nonetheless. Additionally, the doctor told us that while it’s important for Caleb to continue to improve with his walker, he’d like to see Caleb try using quad canes!
This is all pretty exciting for us. Every new piece of adaptive equipment will hopefully lead to independent walking some day!
My last order of business with this particular doctor was to bring up the topic of Selective Dorsal Rhizotomy (SDR). This is a surgical procedure that is performed at a couple select children’s hospitals in the US. This procedure has been mentioned to us before by our doctors who suggested we discuss that route when Caleb is about 5. After doing more research I’ve found that St. Louis Children’s Hospital does the surgery on children as young as 2 with great success. So, why would we consider major surgery that involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord on our 2-year-old? Well, this major surgery could prevent numerous lengthening surgeries in the future in Caleb’s heel cords and hamstrings. You see in growing children, spasticity (muscle tightness) is particularly harmful because it inhibits some muscle growth, and it causes muscle contractures and permanent orthopedic deformities. That’s why it’s important to reduce or eliminate spasticity at an early age. I’ve been doing lots of digging and there are tons of videos on YouTube showing the before and after progress of kids who’ve undergone the surgery. It’s really exciting and inspiring but I have to remember that this is major surgery and there are risks. Another concern is if this surgery is so fantastic and families from all over the world are traveling to St. Louis for SDR, why are our doctors wanting us to wait? I have yet to get a straight answer on that one. We are just at the very beginning stages of this
process but I’ll be sure to continue to update as I find out more.
For now we’ll keep in mind all the good news we’ve heard from the doctors last week, keep working hard in therapy and try our best to stretch those legs of Caleb’s 3x/day!