Three Months in a Nutshell

It’s been three months since I’ve posted anything about Zane. In fact, I haven’t been blogging at all. Each time I think to myself, maybe I should write I blog post, I completely lose all interest in doing it. Maybe it’s because I reserve most of my free time (what little there is) for working on my manuscripts. 

That said, a lot has been going on with Mr. Zane these days.

Where to start?

Zane has experienced some ups and downs with his seizures, but they mostly seem under control now.

Last month, Zane visited a new rehab doctor who expressed concern over Zane’s wrist contractures. Zane used to wear splints to straighten them out, but he has always been far more functional without them, so I stopped putting them on. They truly were an impediment, and the poor kid already has enough knocks against him. However, I was told that (long-term) Zane will have problems with his wrists and will require surgical correction if I don’t do something to prevent the worsening now. Nobody here wants surgery, so I had him fitted for wrist braces a few weeks ago. We’re still waiting to receive them, as they were a special-order item.

As of March, Zane no longer had hearing aids…not because he didn’t need them, but because they had both broken. On May 1^st, he had both a brain MRI and a BAER study (hearing test) done under anesthesia. The audiology portion of all of this has been one huge mess, which I’ll spare you the details. But based on that study, Zane was fitted for hearing aids and should receive the new ones next month.

Now for the big (bad) news. At the end of May, I took Zane to his check-in appointment with the orthopedist. The May appointment was scheduled to x-ray Zane’s back to see if his TLSO was doing its job to slacken the pace of his progressing scoliosis. Unfortunately, all that wearing of the uncomfortable back brace was for naught. Zane’s curvature increased by 12% in four months. That is so not good. Scoliosis in and of itself is not problematic. But how it impacts the respiratory system (the lungs) and the liver is. Bottom line, Zane has to have spinal surgery…this year. And, of course, it comes with potential complications and risks (including potential paralysis). But if he doesn’t have the growth rods placed, he will die. So there really isn’t a choice in the matter. Zane’s current orthopedist is a very nice man with a great bedside manner. But he’s young. Only been in practice for four years. When I asked, “Have you done a lot of these surgeries?” (before I knew the short duration of his practice), he told me, “Well, I wouldn’t say a lot.” That doesn’t work for me. So we’re getting a second opinion next month. There’s no question he needs the surgery, so the second opinion is more of a scouting mission to find the ideal surgeon for Zane. 

I never, NEVER cry during Zane’s appointments. But I almost did when I learned the news about his need for surgery this year. I knew it was coming, but just not this soon.

So that’s the last three months in a nutshell (a rather large nutshell). It may be another three months before I post again. Then again…maybe not.