It may not look like much, a rise of an inch or so. An easy step over from one room to the next by foot. Seemingly not too difficult to push wheeled objects over either. Something so simple, so taken for granted, that we’d almost forget that it existed if we didn’t have a toddler on wheels exploring his curiosities throughout our home.
Alexander loved to explore when he got his wheelchair. Finally some independence! How wonderful! We probably were even more excited than him when he roamed from one room to the next, joining his brothers in play (or interrupting, depending on who you ask). This threshold was the only threshold he had difficulty with. Always able to roll up to it and nearly teeter at it’s peak, but never able to fully cross.
When Alex started receiving treatment his Neurologist was anxious to measure his improvements to gauge his body’s response to this new medicine. This was especially important for future insurance battles, where we will need to prove a significant benefit for continued coverage. It was at that moment that I remembered this threshold. The one area where I knew he struggled but was so close to being successful that it just might be perfect for strength comparisons pre- and post-treatment.
“I think I have the perfect test.” I told his doctor at his first appointment following his initial injection. “There’s this floor height difference from our living room to our kitchen that he has been struggling to overcome in his wheelchair.” I said. “He asks his brothers to help him after failing on his own, but he is so close that any muscle improvement could get him there.” She seemed very receptive to the idea and asked for any updates on his progress with the threshold.
We’ll be updating her at our next appointment with a special announcement. One that may not be so impressive on any other day for any other child, but one that is significant for us because of what it seems to indicate. Alex has successfully propelled himself over the threshold that proved too difficult in the past. Four times in the past two days in fact. This represents an increase in strength, which ultimately could mean that his body is responding to Spinraza.
With Spinraza, mileage varies dramatically. Some see huge improvements, some very little, a few unfortunately see further muscle weakening. Up to this point, with this new observation, it seems that Alex is somewhere between “very little” and “huge improvements.” Time will be the biggest indicator, but as of now this is looking like a +1 victory for Alex. Bring on the next threshold, whatever form it may take.