Category: lifestyle

Perfection (The Game, Not The Goal) For Fine Motor Rehab

During his hospital stay in February, my son had a bad reaction to one of his anti-seizure medicines and developed ataxia, which is the loss of full control of bodily movements. For two days, he couldn’t walk, or talk, or hold his head up. We had to carry him to the restroom and feed him, which was a shock considering he was ice skating only the week before. We didn’t know if this was a permanent situation or if he would ever recover.

Fortunately, by the third day he started to move again, although he was incredibly shaky. His gross and fine motor skills were both severely impacted, and we watched through our tears to see him struggle to hold himself up or hold a spoon or form a thought. While we were still in the hospital, he started occupational therapy, physical therapy, and speech therapy to try to rebuild the skills that were damaged. By the time we left the hospital a few weeks later, he was functioning at about 50% his pre-admission level both mentally and physically.

Since then, he has continued his rehabilitation and, while he is still wobbly and has impulse and attention difficulties, he is better than he was. The therapists at our hospital have been amazing, and they’ve incorporated games as a way to engage my son for rehab without realizing that it what he’s doing. Taking a cue from his occupational therapist, this week we’ve been playing a lot of [easyazon_link identifier=”B00CXEXSUU” locale=”US” tag=”lightningbuddha-20″]Perfection[/easyazon_link].

The game helps develop two different skills. First, the fine motor control required to grab the stem of each piece and navigate the shape in to the board is challenging. I watch as he tries to twist the stem with his fingers to rotate it to fit, dropping it many times but diligently picking it back up. When he rushes or when his ataxia is worse, it’s helping him really focus on muscle control.

Cognitively, he’s having to identify the shape and scan the board to find the match, which can be difficult because there shapes that are similar to each other. He also needs to align the shapes, so his mind has to tell his fingers which way to rotate the shape. Oh, and he’s doing it against the clock.

For now, we set simple goals, just trying to beat his score from the last time. Sometimes he does, other times he can’t. But we encourage him to keep trying because every time he plays, he’s exercising those muscles and pathways that were damaged, which is what they need the most.

[easyazon_infoblock align=”center” identifier=”B00CXEXSUU” locale=”US” tag=”epilepsydad-20″]

June 23, 2015
A Night (Or, At Least, A Few Hours) On The Town

Last night, my wife and I we were able to go on our first proper date (it was her birthday) since we moved to Philadelphia and since our family’s journey with epilepsy began. It was only a few hours on the town, but it came after many months of struggle.

One of the challenges that we’ve had has been to find someone to help take care of our son during the day. Up until now, it’s been primarily my wife, with me filling in after work and on the weekends. But my wife has to deal with the brunt of the behavior every day, all day, as well as struggle to find the time and attention to also give to her business, which she can’t do very often because our son needs near constant attention. And so she has bore the brunt of this for our family, sacrificed much of herself and her business, since it started.

As parents, there was no training for how to navigate this new world. We were simply thrust in to it, as was our son. We’re trying to manage his epilepsy and control and direct his behavior, while at the same time simply trying to wrap our head around what is happening and why it is happening, two questions to which we still do not have answers. Like so many families that are going through the same thing, whether it’s for epilepsy or for another condition, the relentless struggle to simply manage the day-to-day is exhausting, and frustrating, and constant. We have both broken many times, only to go to bed, wake up, and do it all over again.

Back when we lived in Colorado, we got breaks, we had jobs that we could focus on, and we went on dates. We had a few different babysitters, some as young as 15 because they only needed to play with our son and put him to bed. But now, a teenager is no more equipped for the situation than we were when we started. We needed someone who could handle the seizures, and keep him safe during an outburst, and that was trained, and capable, and able to handle the stress of working with a “special needs” kid.

While we need someone with a particular set of skills (cue Liam Neeson), our son’s condition didn’t qualify as a medical necessity that required a nurse so, again like many other families, we’re left in the middle…not a medical necessity but more than a parent can handle. If you need assistance, you need to find it yourself and pay for it yourself, too. Both of those obstacles leave many people helpless, in every sense of the word.

We’re very fortunate that we found an amazing caregiver that is patient and that works academically with our son since he hasn’t been able to attend school. But she can only come for a set number of hours a week…enough to help out and give my wife a chance to breathe, but not enough for her to actually catch her breath. We’re grateful the help and for the opportunity to go out for my wife’s birthday, especially since we know that there are other families that are not as lucky.

May 27, 2015
Livin’ La Vida Normal

Tonight we did something that we haven’t done in a while. We went out with friends.

We’ve been in this city for eight months. Two of them we spent in the hospital, most of them we’ve spent trying to find the balance between giving our son a normal life while constantly worrying about his seizures and his epilepsy. He hasn’t been able to return to school for more than a few hours a few times a week, if that, between his fatigue, his therapies, and his behavior. The poor kid is lonely. His only playmates are his parents and the nurses, therapists, and doctors at the children’s hospital. Even tonight, strolling along the street, we ran in to one of the nurses from the hospital who recognized us and came over to say hello. And I’m grateful for that. I’m grateful that they care so much, I’m grateful that he’s left an impression on them. But for once, I’d like him to run in to a classmate, or a friend.

Tonight, though, we had a bit of normal. The one day this week our son went to school, he ran in to his one friend that he’s had a playdate with since we moved here, and his friend’s parents invited us to go with them to the Night Market, a street food festival in Philadelphia.

The streets were packed with people, but our son and his friend stayed together, and played, and we talked and had a wonderful time with his parents. We walked through the mob, inspecting the trucks and grabbing a beverage and some dinner. Our son, of course, couldn’t have anything because of the ketogenic diet, but he didn’t care. He was out, running in the streets, right alongside his friend, because that’s what normal kids do, and tonight he was a normal kid. And tonight, we were normal parents, doing what normal parents do, too.

May 14, 2015
Some Days…

Some days, the ball hits you in the face.

Some days, you hit a home run.

Some days, I feel like all I post are sad, depressing stories. And maybe I do. Our lives are full of a lot of that now. But we’ve gone from a lot of bad days, to fewer bad days as a whole, and to just bad parts of days. We’ve even had our first two good days (defined as a) no seizures b) not having to hold him down and c) no screaming) since February.

Even on the days with bad stuff, we’ve had some good stuff, too. My son has met some amazing people at the children’s hospital, and those people care for him very much, and make him feel special when they see him. He’s even participated in a fashion show and a YouTube video while he was there.

In the last few weeks, he’s gotten off multiple medicines and transitioned to a very difficult diet that has helped with his seizures. He’s fought through 5 seizures during a teeball game and multiple attempts to bring him home only to get three hits and score twice. He’s met a football player, a professional ultimate frisbee team (that’s a thing), and super heroes. He’s shown himself to be stronger and braver than I could even imagine.

Some days, life seems hard, and hopeless, and unfair.

Some days, there are specks of light poking through the darkness.

And we’re grateful for each and every one of them.

May 7, 2015
Two Steps Forward, Eight Miles Back

We’re back on the neurology floor, a week after starting the ketogenic diet. While we are seeing a decrease in the number of seizures, which we hope are attributable to the keto diet, we’re not seeing any progress in his abnormal behavior.

I can’t say that I blame him. Having seizures isn’t fun. Always being tired isn’t fun. Although not going to school probably sounds like fun, it isn’t when you don’t get to see your friends and have to hang around a stressed mom and dad all day long. And now he has to drink oil and cream with every meal, a far cry from pizza and cheeseburgers. But it’s more than that. It’s not an occasional temper tantrum that comes with being five, it’s deceptive, and manipulative, and angry. He’s trying to hurt us and himself, and sometimes he doesn’t remember doing it. That’s what brought us back to neurology.

After a day of monitoring, the good news is that the outbursts don’t seem to correlate to any seizures. The bad news is that they don’t correlate to anything other than being tired, so we’re left guessing whether it is a side effect of the medication or some remnant left over from when his seizures were really bad that altered his core.

Not knowing is always the hardest part. Not knowing when it involves your five year old makes it all just unbearable. It’s tiring, and frustrating, and scary. While I haven’t given up on the long term goal of him playing in the NHL, the reality is that we’re much more focused on the day-to-day. Whether the diet works for his seizures or not, what will his quality of life look like if his brain can’t keep a lid on his emotions? What will it look like if he’s constantly tired, or if his parents are constantly tired and on edge?

There is so much about this that falls outside of the realm of possibility that I thought possible as a life for my son. I’m really trying to focus on the positive, and to be grateful for the nuggets of goodness that we find along the way even though many days, it feels like we take two steps forward, only to find ourselves eight miles back.

April 26, 2015