It seems as if a hundred years have been lived since my last update. Ok, maybe that’s a bit of an exaggeration, but not by much. We’re slowly getting major projects checked off the new-to-us-home project list, we successfully completed our first bootcamp, and then I got the plague. After two brutal weeks of flu-like symptoms and respiratory junk, I’m finally back in the land of the living and working to regain normal activities again. I’ve been dying to write for months, but babysitting contractors, housework, and general exhaustion have gotten in the way. So here’s the most recent info on Ryder’s progress, since so many have been asking lately:
For the last couple of months, we’ve been pressing on our neurologist to get in touch with other doctors around the country who have been working with other “Outbreak Kids” and having some success with tests and surgical procedures we haven’t even discussed. We were simply hoping to gain some perspective, and see what we might be able to try. He totally blew us off, noting that he never believed Ryder would progress past what he observed in the hospital, and that there’s really no use in trying anything else because it won’t work anyway.
Clearly he doesn’t know Ryder very well, because he certainly has progressed (albeit slowly), and he won’t give up until he’s satisfied.
Long story short, we were given the name of a different neurologist who dove head-first into a difficult case that every other doctor ran away from, and she got results. We met with her in Oakland yesterday, and we appreciated her willingness to listen to everything we had to say. She thoroughly examined Ryder, and asked plenty of questions about our experience so far. And then she did just what we hoped… she set to work scheduling appointments with a pediatric orthopedic specialist and pediatric neurosurgeon who will review Ryder’s case and determine whether or not he would benefit from tests or surgical procedures. We’ll also meet with a physical therapist whose job will be to help us design a special brace for his shoulder to provide more stability.She brought up Ryder’s x-ray from when we discovered his broken arm, and explained that it broke because he has osteoporosis. Since his muscles have atrophied, they aren’t giving his bones a workout which has made them weak and brittle. That’s a scary pill to swallow, but it makes sense.
She also noticed that Public Health determined the virus Ryder had was Coxsackie B3. Knowing this doesn’t change anything for us, but it’s interesting nonetheless, especially since the symptoms listed on Wikipedia have nothing to do with our experience.
As far as physical changes go, both our occupational therapist and our chiropractor have noted that the subluxation (separation) in Ryder’s shoulder feels a little smaller lately (which is a good thing). We have also noticed stronger movements in his thumb as well as a few other places. “Stronger” is relative, but we’ll take it! We resumed e-stim treatments at home a couple weeks ago as well.
Ryder continues to live life as normally as possible, and we still work hard to make it possible for him to try whatever he wants. Most recently, he asked to go to the driving range… something he hadn’t done since before he got sick. Situations like this can be scary for us because Ryder is a very emotional kid, and if it turns out he’s not successful at something, it can be devastating for him. But we managed to scrape up a left-handed iron for him to try, and in typical warrior fashion, he proved that he can do whatever he sets his mind to. He enjoyed himself so much, we went ahead and purchased a full set of left-handed clubs for him, and we’ll be dusting off our own clubs right along with him.My heart is really conflicted lately. I’m SO proud of how hard Ryder has worked and the attitude he has maintained over the last 15 1/2 months, and there are so many opportunities to celebrate a new success, and so many times when I feel like complete healing is totally attainable. But there are still plenty of heartbreaking moments where I witness his frustration or embarrassment over a question asked by a stranger or realizing he can’t do something the way his friends can. It’s the worst kind of torture. There are times when I am surprised, or maybe just snapped back to reality – like when I watch him struggle to get his shirt off, or have to wait for him to accomplish a task because doing it one-handed just takes longer – because I often forget that his arm still doesn’t work. And sometimes we become complacent… we’ve learned how to function pretty smoothly on a daily basis. But he’s seven, and still lives under our roof where we can protect and encourage and come to his rescue when he needs help. However, it won’t be long before we start facing new obstacles. Will he be allowed to get his driver’s license? Will he need special controls or a handicap placard? How will he type a paper for school, or text his friends? What about when he goes off to college and has to ask his buddies for help, or when he gets married and has to do some kind of household repair? I realize these are all first world problems and that, just like everything else, he’ll figure it out eventually. But my mama-heart breaks for him during these lessons in humility and persistence.
We cherish your continued prayers and humbly ask you to keep them coming!