Wednesday, February 27, 2019
A quick little update...
Haven't been doing very much as far as creative projects... The last two weeks has been a combination of hospital visits and papers to grade.
Mackenzie is doing much better -- but we still don't know what exactly is causing the symptoms, and whether or not they will return...
I have been listening too Stephen King's IT. It's good vs. evil motif speaks to me even more than I did when I read it back when I was 15.
For the most part, I've been going to work, grading essays, and trying to stay positive.
I did get some notes from my agent about my chapter book, so hopefully I'll find some time and energy this weekend to do another revision.
Hope things are well in your world.
Monday, February 18, 2019
On Superbowl Sunday, our daughter started showing symptoms of spinal inflammation. If you follow me on social media, then you might recall that back in December Mackenzie was in the hospital and had lost her ability to walk on her own.
In January, she had recovered enough so that she seemed to have returned to normal -- except for the lingering back pain. Doctors weren't exactly sure what was causing these problems, but they believd it had something to do with syrinxes -- little pockets in her spine that may or may not be filled with fluid.
So, she had been doing well -- and I had my fingers crossed that those symptoms, which arrived mysteriously back in Octorber, would just as mysteriously never return. Unfortunately, that wasn't the case.
As I said, on Superbowl Sunday, Mackenzie awoke and her legs were malfunctioning. It wasn't as bad as back in December, but certainly bad enough to warrant a trip to the ER.
Long story short: she was at Henry Mayo for about four days -- and we were unable to transfer her to the UCLA hospital (we should have listened to Mackenzie when she said she wanted to go to UCLA to beginn with). But when we discharged her from Mayo we went home for a few hours, so she could shower and hug her dog, and then when the symptoms did not improve, we took her to UCLA.
The doctors at Mayo were good, but the medical team at UCLA was amazing. She was there another four days? Five days? It's a blur now, so I can't quite remember.
But I do know this... The UCLA doctors do not beleve her symptoms are caused by that syrinx. They believe that Mackenzie has Multiple Sclerosis.
I'm still in shock about this. My whole family is, I think. And Mackenzie goes back and forth between being brave / optimistic and scare / depressed -- and who can blame her.
She's been home from the hospital since last week. The steroids have been helping. She gets around in her walker -- and she has been much less shakey. While in the hospital, she began having double vision, but her eyesight seems to be doing a bit better, though I think it still might be blurry. Perhaps best of all, her pain level is much more managable. She has not taken her Norco pain pills in the last two days. A very good sign, I think.
She will see more doctors this week, as an out patient this time. We will find out more about treatment options very soon... And I think they might do a couple more tests.
So, that's what's been going on with me this month. It really sucks.
I know a lot of people lead healthy and productive lives with MS, some of them with little to no disabilities... But I'm very afraid of my daughter's future -- both the immediate and the distant.
I want her to be able to drive her car again. I want her to be able to walk her dog, and go jogging or surfing. I want her to be able to teach children martial arts.
I'll stop now before I get too maudlin. As sad as this experience has made me, I have also been counting my blessings. My fanily and I... We still have so many things in our lives, so much to be grateful for, not the least of which is hope.