The day after Christmas, Richard and I enjoyed a quiet, post-holiday-chaos evening at home with just Colten. Parker and Max stayed at my parents’ after the Christmas day festivities. Good thing too… I think Parker had consumed at least five cookies between 8-9pm!
We had just finished watching a movie and Colten was sound asleep on me. Usually I do not put socks on him because we are constantly poking at his toes and watching his feet. And since he cannot move his toes, socks end up giving him nasty toe-jam. You know, that lint/fuzz that gets stuck between your toes? It’s nasty. And I get to clean it out. So less sock-wearing means less toe-jam. Yesterday he had socks on though, since he was out running errands with his Daddy earlier. I took his socks off as he laid there asleep and noticed that instead of being cozy warm from being inside the sock, his right foot was quite cold. Typically, people with myelomeningocele do have reduced blood flow to the areas of the body lacking motor and/or sensory function. Colten’s feet are always a little on the slightly cool side. Nothing significant. Could even simply be because I don’t put socks on him. He does have reduced flow though – we know this because the person re-drawing his newborn scan barely got any drops out of his feet at our last appointment. Either way, I was quite surprised at just how cool his foot felt after having the sock removed. I noticed the sock had left an indentation above his ankle and figured even just the slightest pressure reducing circulation must have a greater impact on him since his flow is already reduced. So I started massaging his leg and foot to get the blood flowing a bit more. Then I started scratching, pinching and poking at the bottom of his right foot. Previously, we have seen some slight flexion in the left. Nothing in the right though. Until today!
As a pinched a part of the bottom of his right foot, I apparently pissed him off enough in his sleep, or the simple pain sensation triggered it, but he flexed up that right foot! Over the last two days we have been poking some more when he’s awake. It provided mixed results. I saw flexion during a full body stretching episode and once again while pinching. But I pinched many more times and got no response. But no other movement. So it seems to be very involuntary, almost simply bodily response based if that makes sense. An involuntary reaction. The fact that we saw any movement at all though is promising for future development.
Colten continues his treadmill work each day and has done some amazing stepping sequences. It’s hard to remember that the point of the treadmill is bone strength and really has little to do with walking. There is a chance it could improve his gait and of course provide a stronger foundation. But we won’t know walking status until Colten can show us what he wants to do.
Hope you all enjoyed your holiday festivities. Colten had a great first Christmas with his brothers, parents, grandparents,