First of all- another clear MRI!!
Jack had two great appointments in January. He visited our old friend, Dr. Walter in Oncology, and showed off all of his signs, his moves, his personality and sense of humor, and his attitude. Dr. Walter showed us some of the MRI images of Jack’s brain, which is looking pretty amazing.
I always ask how the ventricles that house the cerebral-spinal fluid look, and if they are continuing to shrink. It was not symptoms of the tumor that alerted us to Jack’s disease, but rather the symptoms of hydrocephalus, and hydrocephalus is a pretty big concern for Jack, even after all of these months, as it is being regulated by a prone-to-failure shunt. Jack had some pretty significant hydrocephalus at the time of his diagnosis, which enlarged the ventricles of the brain significantly. Now that Jack has no more tumor blocking the flow of CSF and has a shunt to help divert any CSF that may not be draining properly, I was curious to know if the ventricles are continuing to shrink down. This was the first post-op MRI that showed no shrinkage. I wouldn’t say that I am concerned about this- just curious really. We will continue to take any headaches or other minor symptoms pretty seriously.
We also had a very long appointment with Jack’s therapy team at NNK. Overall, Jack continues to impress everyone and has surpassed many of the goals that we set for PT, OT, Speech, and Developmental therapies six months ago, with a few exceptions. Jack still has some fine motor issues to overcome, his head is still markedly tilted to one side, which throws off his balance quite a bit, and he is not yet walking. PT had the most to say, reporting that his feet are indeed still pointed outward, meaning that it is time for us to bring in yet another specialist to evaluate him for corrective orthotics. Between the unsteady feet and the tilted head, the balance required in walking becomes hard to achieve, though Jack does amazingly well -he can almost run!- if he has his toy walker or an adult’s hands to steady him.
We also learned that our dude is now a seriously ornery toddler, He doesn’t like to work very hard at PT and OT; he has found ways to pull the nursing team into his scheme to get out of hard work. The therapy team reports that he has learned the power of ‘no’ and uses it pretty emphatically. They actually have to set him up with a “non-preferred nurse” prior to group activities or his regular therapies if there is any hope of him getting work done. It was an odd moment for me, learning all of this. On the one hand, it was so thrilling to be talking about Jack as a normal, willful toddler-smart enough and resourceful enough to find a way to deal with life on his own terms. On the other hand, it was a wake up call- a sort of “hello, you’ve reached a new phase” moment. Jack is learning how to manipulate and tantrum his way out of things, so we have to be careful moving forward.
I learned that children who are medically complex often exhibit these kinds of controlling behaviors. All day long, there are people “doing things” to Jack- popping a tube in and out of his belly for feeds, suctioning him, changing his trach ties, putting a ventilator on and off, etc. All of that coupled with very frequent, very unwanted doctor’s visits, and you have a child who feels totally out of control. I have no doubt that Jack’s lack of communication and mobility skills frustrates him tremendously. Who wouldn’t seek ways to control their environment, to find some predictability, to set up boundaries?
Our new marching orders for Jack are to continue to work on communication (he has now added “caterpillar” and “mommy” to his list of signs), and to give him more control over his world. Instead of handing him a toy, we are to offer him two and let him pick. Instead of dressing him, we are to allow him to choose his clothes. We must try to find ways that Jack can lead, rather than follow. We must try to involve him in family chores (he loves throwing away old wrappers, etc). In short, we need to channel this ferocious little mind that Jack is so very lucky to have kept intact.
I hope we are up to the task.