When a doctor tells you your son has no motor or sensory response on his legs at all, it is pretty damn awesome to see him use a Johnny Jumper! We have not used this much with him because the treadmill study folk want us to avoid use of it until after he’s done with the study (at around 13 months of age). Richard put Colten in it the other day while the boys were playing in the basement and he loved it! Now the setup in a Johnny Jumper is such that you need to have the seat hanging at a height so the child’s feet are just touching the ground. When we did that, Colten did not seem to react much and became rather frustrated [ see video ]. When we lowered the seat a bit so his legs bent more, he just jumped away [ see video ]! We’re interpreting this to mean that he really isn’t getting sensation through the bottom of his feet. When the top half of his leg is bent upwards though, he senses that change and attempts to straighten his legs out. You can tell by watching the two videos that the “push” seems to be driven through the knees/thighs as opposed to his feet. Either way, he is JUMPING! That’s pretty awesome!
And speaking of treadmill study stuff, he had another big testing day a couple weeks ago. The team brings all this equipment, their own treadmill, cameras, computers, and other measurement devices. He had one day a few weeks ago where he actually did take 2-3 quality steps. Alas, not so much for the big testing day. He does bring the left leg forward in a good step every now and then, and even will pull both legs up and forward together, but his right leg gets caught up behind him and prevents him from taking a forward stride with that leg. Children with myelomeningocele often have weakened hip muscles which makes taking steps difficult to begin with. It also makes it hard for him to pull his right leg away from getting caught behind the left. Over time, he will work on this strength-building and hopefully be able to figure that out.
At nine months, Colten is rolling around to get where he wants to go. He can twist himself into a sitting position and is starting to rock back and forth while side-sitting. It’s a precursor to crawling for sure, he just has a long way to go still! The great reinforcer in all of this is that his movement patterns are exactly what he’s been learning in his Anat Baniel Method sessions! The only other new movement is that now he sometimes fall straight backwards again. I think he’s getting a bit too confident in his butt-rocking movement and just topples himself too far back.
How does that compare to a typically developing child? Nine months is an age where many babies are crawling, some can stand up while holding onto furniture, and if placed in a jumper, can jump enthusiastically for quite a while. So that’s that. We do a fairly good job of just comparing Colten to Colten most days. Most days.
In more update news, Colten has had two cranial sessions now. His head is no longer shaped like an extra-oblong oval. Well, it kind of still is – but it is also now shaped like the letter D! The work Dr. Grimshaw is doing appears to be helping the right side round out. The left side – not so much. Colten has his third appointment this week and we are anxious to see if we just need to follow through the full round of recommended appointments or if we need to pursue other/additional therapies.
Besides that, we are watching him closely these days as choking and gagging seem to be more and more prevalent. Anything too thin (water, his own saliva!) or with the slightest chunk in it at all and he is gagging easily. While this could just be a combination of food textures and getting the hang of it and teething, choking and gagging easily can be quite common in children with Spina Bifida due to the Chiari II Malformation. His malformation is “not that bad” so we are hoping this is just a phase. To be on the same side, we are avoiding too-chunky textures and trying to keep things pureed as much as possible.
That is all for now. I have a couple more posts related to some general questions people have asked, so watch for those to come, along with something else at the end of this coming week. Colten has a cranial appointment and Anat Baniel session on Tuesday, then the myelomeningocele clinic rounds and a treadmill appointment on Thursday. Hope your week is just as enjoyable as ours 😉