Thursday, August 4, 2011
Opening the Can of Worms
It has been a while since I last wrote, part of that was due to vacations and Relay For Life etc...But part of it is due to me not wanting to proceed. You see in June a physical therapist was added to Jasz' list of people. Her name is Kate. Kate is wonderful and she sees Jasz through a clinical lens instead of an emotional one. Plus her eyes are fresh, so instead of simply seeing the improvement she sees where he has problems.
If you may recall, last time we saw Dr. Carter she said he likely has Peripheral nueropathy. That "diagnosis" gave all of his therapists pause. First, they are not sure it's correct and second if he truly does have it then we really need to know to what extent and the cause so we know if there are possible future consequences.
So pretty quickly Kate recommended we take him to Stanford. From her perspective a new set of eyes needs to look at him. Her thought was, "if you are going to change then go big." You see at Stanford's children hospital, that is all they do is run tests on children...therefore they read those tests more clearly.
Frankly this was like a punch in my gut. Weren't we here in this same spot last summer? Except this time Jasz is walking and I thought we were on the downhill slope of this whole thing. I mean why would I reopen that wound when he is doing so well.
It really did send me into a tail spin, because it brought up that maybe he isn't in the clear yet. In talking it over with a few friends and family it was explained to me like this. Say you write a paper and you believe with all your heart it clearly talks about "Y". on a last edit you have someone else read the paper and to them it clearly talks about "Z". It's a little like that with Dr. Carter. She has been wonderful for Jasz and I feel like a miracle worker considering we had been told he may never walk. She also, though has seemed to a little bit be grasping at straws to find a reason for what is going on with Jasz. So to some extent she has made her data fit her diagnosis instead of it speaking for itself. So a fresh pair of eyes is probably a good idea.
I watch my son walking and wonder why I am doing this, I see his smile and hear his laugh and wonder what possibly painful tests they will run. I capitulate on my decision. Last week, however, I steeled myself for the conversation I didn't want to have. I called Dr. Carter's office and asked for the referral...and they sent it. I will likely be waiting until October but we are on the path to going to Stanford.
You see, Jasz is walking but he still has almost no Patellar reflexes. He also goes in and out of constipation. He walks like a ballerina and also rolls his foot in so he is walking in quite an awkward stance. Kate has recommended braces as the high tops ended up being too heavy and he tires too quickly. He can't life his right leg up when climbing a ladder at times, and if his right leg leads on a steep slope or a ladder he almost can't do it.
He is also an anomaly in that sometimes something works perfectly one day and won't work at all the next. He can't jump and he doesn't run. Trina and I thought he did, but having Kate's clinical perspective was good, because she pointed out that a run involves two feet off the ground at times and he doesn't get into that stride....he is simply a super fast walker. He cannot balance on one foot and kicking a ball is more like scraping his foot along the ground until it connects with the ball. He does this well, but it is not technically what is considered kicking.
I give this list not to say, "see there is something wrong" but as a reminder to myself that not everything is right with him and I am doing what is best for my son. I am not being chicken little, I want to have answers that are definitive and correct so he will know and understand his own mobility as he grows up...as his mother I owe that to him. He is smart and finds ways around tasks that I never thought of.
I find myself getting emotional as I write this. I think it's because I am opening that can of worms. We had what I thought was a handle on his diagnosis. I have had two Dr.'s (not in the field of neurology of course) tell me he looks great and doesn't need any more testing. Kate's response to that was, "they obviously don't know anything about the field of neurology." This did make me feel better, but it still a little feels like, "why am I doing this again?"