Water Therapy and an Update

Today we met Zane’s PT at the rec center pool for therapy. I don’t know why we’ve never done this before. Being in the water is the perfect way for Zane to feel movement throughout his body, as well as to get the much-needed extension his body craves. Zane spends a lot of his time in flexion (sitting in a chair, doing abdominal crunches, sleeping curled on his side). In the water, he doesn’t have to fight gravity so hard, so he’s able to straighten out quite a lot.

I was so impressed by the exercises Cindy showed us (and by how much Zane absolutely LOVED them). She and I are certain that swimming is his sport and that if it’s made a regular part of his routine, we’ll see tremendous progress with him in movement. We’re hoping he’ll even learn some swim skills along the way.

As far as Zane’s seizures go—there is no improvement yet. Of course, the neurologist only upped his dosage a day or two ago. I’ll monitor him for the next ten days, then call back for another check-in. Normally, he has one seizure here or there during the day. This morning he had three in a row. I’m absolutely surprised he accomplished an hour of therapy at the pool afterward…with a smile on his face  no less. Normally the seizures tire him out, and all he wants to do is sleep for a while after having them.

On a separate, non-Zaner note: Justin’s baseball team (the underdogs in the league) won the team tournament this past week 14-12. Because Justin's team has the rep as being the "losing" team, the other team showed up pretty arrogant and overly confident, so it was beyond awesome to watch them win and have fun. Since they won, they get the honor of playing in the town championship tomorrow! I am so super proud of Justin—and the whole team. They so needed the taste of success to feel good about themselves and their baseball playing (something I, too, am hoping to know with my writing after so many rejections).  If they win tomorrow (despite having a ‘non-winning’ record), they are the champions! Fingers and toes are crossed. I would love to see them make a comeback and show that even the defeated can achieve success!

You know, I'm supposed to be an example to my boys. And I am. But so often, they show me the way to be; they teach me what it means to be alive in this challenging world. Through Zane, I know smiling through trials can make the difference. Through Justin, I've learned that Jelly Bellies can turn a bad mood into a not-so-bad one, especially if you hand pick them from Fuzzywigs!

Chaos and Seizures and Taking a Breath

Life has been chaotic. There is a great deal of change happening in our lives, which has me exceptionally overwhelmed and sad and—really—running a whole gamut of emotions. But those things are outside of Zane, who has his difficulties, too.

The seizures are on the increase. A couple of weeks ago, I noticed that they began making their appearance at least once a day, where as before they were happening maybe once a week. I called the neurologist who upped Zane’s dosage of Keppra. “Give it 10-14 days,” I was told. We’re on day eight right now, but there is no improvement. Not only have the seizures refused to stop, but they have become different. More concerning. Before, they were myoclonic jerks. Now they seem to involve his whole body, and Zane becomes noticeably disturbed by them—puckering up as if he’s going to cry, a look of utter panic splaying itself on his beautiful face. By Thursday, I will call the neurologist again. What I don’t want to hear is the need for an MRI—particularly because of the change in seizures.

So, in the midst of all the stress we’re under, I’ve been trying to find quiet times for the three of us. This weekend—and again today—we went up to the college and flew our new kite. We had little success keeping it up the first time we were out. But today, it soared. Zane camped out in his wheelchair under a tree, while Justin and I took turns guiding the kite through a sky of cumulous clouds. It was a great way to check out—if only for a short time.

Redefining Beauty

I was doing research for Monday's Moxie Writers post. I struggled to find something related to Media Mondays. I searched MLB. Nothing. Indie artists doing something for a cause. Nothing. So when I saw this post pop up in my Facebook news feed, I was immediately drawn to it. Then I viewed the photos, and I was touched. After watching the NBC video, I was absolutely moved.

We have such strict criteria in our society for beauty. Often that includes high cheekbones, a strong jaw, perfect teeth. But fashion photographer Rick Guidotti is redefining beauty through his art. The main purpose of his work is to present realistic (rather than devastating) images to parents about what disability truly looks like. Hint: it’s really not the scary thing society of the past has made it out to be.

Check out his photos and the video and see for yourself. Rick was present to take photographs at SOFT's annual convention, which appears in the segment, as well. I so want to meet this man someday! What an amazing and life-changing way to use his talent!

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R&R in AZ

Last Friday was the last day of school for the boys. 

After a hike up the Lion’s Den Trail to Fort Lewis College with the third graders (hiking with third graders is…interesting), we drove to Arizona for a much-needed getaway and to take care of some business things, as well. Since we left around 2:30 pm, we didn’t arrive in Phoenix until sometime after 10:30 pm.

View from the trail. 

We were late getting back to school after the hike. The SLS staff took excellent care of Zane. When I picked Zane up, I discovered this...

Chase said since it was hot out, they rolled up their sleeves. Since their guns were showing, they wound up with matching tattoos! How cool is that?

With baseball and doctors’ appointments and writing and chauffeuring and job searching and—you get the picture—we’ve been going at a frenetic pace here in CO. It was good to leave town for a bit.

Here’s what we did:

Pool

Floating in the pool. 

Six days in a row for J (including a midnight swim on the night of our arrival—crazy kid!); five days for me; and Zaner only managed three times in the pool. He slept quite a bit. I think the sweltering AZ heat took a toll on him. Lethargy was his companion for most of the trip. Plus, he wound up with some funky rash on his face. 

Movie

We saw Epic, which wasn’t all that…epic. Justin rated it 50% (whatever that means in kid-ese); I texted during part of the movie; and Zane fell asleep halfway through. In the world of Siskel and Ebert, that equates to a thumbs down.

Arcade

When I hear the word “arcade”, I think of the 1980s when my friend, Samantha, and I used to visit one at our local mall for the sole purpose of seeing the guy who worked there. Today, things have been ever so slightly updated. You know, graphics are just a little more realistic than in the days of Astrosmash and Pac-Man. Justin wanted to visit the arcade in the mall, and he had a blast. I was a little concerned on Zane’s behalf because the majority of the video games have warnings for those with epilepsy and seizures. But Zane did all right, and he seemed to enjoy the whole mall experience, especially moving through it after the arcade portion ended.

 ***

We had a really relaxing trip. I did zero writing on my trilogy, which did little to bolster the word count I had planned to sweat out over the summer. But I read and relaxed: something I truly needed after a bit of a hectic year to this point.

As far as Zane’s health goes: his seizure activity has increased a bit in the last week or so, despite the medication increase. I always worry when things change with him, such as the upswing in the seizures and the increase in his sleeping. I never know if this means something else is going on in the background or (as my hopeful self tells me) is simply part of a growth spurt or brain development changes.

Anyway, it is officially summer vacation! My absolute favorite time of year because I am off chauffer duty, and I get to spend lots of time with my precious boys! Plus, nighttime baseball games will finally be enjoyable instead of crazed and rushed.