Colten’s motor response has been completely absent below the knees. Until a few days ago. When feeding him, we often mess with his toes, feet and calves, hoping to stimulate his body to make the connection that “hey, there’s something down there!”
We were told that usually 2-3 weeks post-op is when you have what you have – that he could see gains in the first couple weeks then he would stable out in terms of motor and sensory response. But a few days ago as I scratched my nail on the bottom of his left foot, ever so slightly he flexed his ankle up away from my finger.
We keep trying to remind ourselves that he’s only a baby still and we certainly never thought about how or if our other kids would walk when they were this young. We didn’t look that far into the future. We simply enjoyed them as they were at that age. And while we do enjoy Colten as he is at this age, it’s hard to avoid the future outlook simply because it’s thrown at you with every appointment, every diagnostic evaluation, every therapy appointment, and every medical document sent in the mail.
Now ankle movement isn’t the deciding factor if he will walk independently – it has more to do with the motor responses around the hips. And we’ve been told he may not have much in the hamstrings and glutes. But we were also told he had NOTHING below the knees. So we won’t ever assume it’s a “done deal”. We’ll just keep enjoying him and taking advantage of what he shows he does have. And if we find that sure enough he doesn’t have sensation on his feet, we can design a “safe biting” chart to give his brother Max. Kidding. Maybe.
We had the pleasure of connecting with another family recently and enjoying some time at Play., an indoor play place in East Lansing that is wonderful for kids! One of their sons has Spina Bifida/Myelomeningocele as well. It was definitely a small world connection – one of Richard’s mentor teachers knew the mom, and I knew the mom’s sister from way back in high school/college days! You can follow the story of their Redirected Flight on their blog. Kelly has been a wonderful source of strength and rational thought and information for me over the past few weeks that we’ve connected. Their son, Grayden, is so amazing to watch! They were given a poor outlook for his walking abilities as well, and he is defying everything by walking completely independently – no braces or mobility devices like walkers. They are avid supporters of the Anat Baniel Method (ABM), which we are exploring for Colten as well. It’s an interesting therapy that works on body/brain connections and focuses on improving what a person can do based on their existing abilities and slowly advancing them at a comfortable speed, instead of pushing them too far beyond their skills just to align them with typical-developing children.
And in COMPLETE contradiction to what I just wrote, we are entering Colten into a study at U of M that is focusing on improving bone density in myelomeningocele kids. Since they are prone to more fractures due to lack of use of some bones, doing impact exercises (walking, jumping, etc…) could help develop stronger bones, thus reducing fractures. So how do you do impact exercises with an infant? Apparently you hold them over an infant treadmill to walk for 10 minutes a day. Seriously. I have no idea how this will work since Colten barely lets his legs hang down and can’t feel much below his feet yet. So we shall see. We have our first appointment/evaluation for the study Thursday. More to come – with interesting pictures I’m sure, after that!
Here are some other recent pictures (or click Photo Stream at the very top of your page for more):
The last picture shows the healing progression of his back. I pushed it down a ways in case you are queasy. If you are, stop scrolling. The image collage shows the ruptured sac of meninges on his back after birth and frankly, it is a bit nasty looking! But interesting!