lifestyle Archives - Page 32 of 32

Resisting The Inevitable

When my son’s epilepsy diagnosis came, it came with a list of changes that we needed to make to our lifestyle. No more baths without supervision, no more swimming without someone else in the pool, and no bunk beds. The first two changes were precautions to prevent drowning, and the last one was to prevent falling out of bed during or after a seizure.

A few months before his diagnosis, to help ease the transition for my son with our move from Colorado to Philadelphia, we sprung for a new bedroom set for his new room. The bed? A loft bed with a slide, clearly not on the epilepsy-friendly list.

We really struggled with what to do. The diagnosis was new, and it was bad enough that our son was having seizures, we didn’t want this also to mean we had to start taking stuff away from him and changing his environment. Besides, we told ourselves, the medicine was doing its job, and he wasn’t having seizures anymore. So we let him keep his bed.

As it turned out, his seizures weren’t under control. They were masked by the medicine and they evolved, happening early in the morning and shortly after he woke up…both times when having a bed that was five feet off the ground posed a serious danger. After our latest hospital stay, my wife and I finally had the conversation that we had been putting off and made the decision to create a safer environment for our son.

Instead of ordering a new bed, we talked to our son about converting his fire station loft bedroom in to a ground level hockey bedroom and he was thankfully on board. Most of the time, he handles so much of this better than I do, and my fears about him resisting these changes or feeling like his epilepsy were going to ruin his life proved a much easier conversation, especially when we talked to him about the silver linings and making him a part of the process. He will get to help pick his sheets and blankets with his favorite teams. With the slide removed, there is more room to play hockey. And, probably most importantly, lowering the bed is the next step in to him being able to sleep in his own room again.

The lesson is that safety should always come first, and that there are ways to make these transitions less traumatic. It just takes a little creativity and a lot of love, which our family has in spades.

Oh, and by “converting” his bed, I broke out the circular saw…

…and cut the legs down on his bad to a safer height.

I wish taking away his seizures were as easy.

A New Normal

The idea of normal for me six months ago feels very different from it does today.

Six months ago, none of this was happening. We were an ordinary family with an exceptional boy growing up in a normal way without seizures, without medicine, and without a diagnosis.

Then the seizures came, and our normal changed. Normal was daily medication. Normal was carrying a rescue medicine with us where we went. Normal was explaining to caregivers and teachers what to do in case of a seizure when we barely knew ourselves.

That was our normal for awhile. But then the seizures changed, and the medicine he was on also needed to change. Only, that medicine didn’t work, so our normal became more seizures, and hospital stays, and testing, and a search for answers.

This last hospital stay, a bad reaction to one of the medicines caused something called ataxia, which means our son basically lost control of his body. Thankfully, when they stopped the medicine and he is slowly gaining back control of his body and his mind, but we’re left to wonder how fully he will recover

Six months ago our normal was talking about how our son would be a hockey player when he grew up. Now we’re just hoping we can regain what was lost, and hopefully figure out a cause, or a treatment, or preferably both.

We’re still in a place where we don’t know what our new normal is going to be. But whatever the future holds, there is one thing that will always be part of our normal, and that is making our son feel exception.

Because he is.

Home

We were discharged tonight.

My poor little man didn’t even make it to the taxi before he fell asleep, slumped against a pillow in the wheel chair while waiting in the lobby. We carried him in to the house and laid him on the couch while we brought in the bags of toys and clothes that accumulated in this latest hospital stay.

I think the idea of coming home was such a relief for him that his body was finally able to relax and he was rewarded with a well-deserved slumber. In the last two weeks, he’s been poked, prodded, and tested, as well as having seizures, switching medicines, and dealing with a toxic reaction to one of them. For three days he lost control of his body and we had to help him sit up in bed and carry him to the bathroom, which must have been impossible for him to process when, days before, he was taking slapshots in the basement and running circles around his old man. That, and I can’t imagine what being stuck in a hospital room for more than two weeks does to a 5-year old. Tack of side effects to brain altering medicines. It’s an impossible recipe to grasp.

But tonight, we are home. He’s asleep in our bed while we watch him on a webcam, hoping he’ll sleep but waiting to see if he’ll wake up, if we’ll need to battle him to go back to bed, or if he’ll have another seizure.

Our son is anything but ordinary. Unfortunately, that characteristic carries over to his epilepsy, as well, and his treatment has been tough to get a handle on. Shortly after each of our previous hospital discharges, we found ourselves confronted with a new seizure and a new complication that brought us back to the emergency room.

We are hoping that this time will be different. We’re hoping that we found the right medicines. We’re hoping we made the right choice to come home and try day hospital rehab instead of in-patient. We’re hoping that being home will help him return to his baseline. We’re hoping that everything lines up, that we made the right choices, and that, soon enough, our son will be back in the basement, taking slapshots, and running circles around his old man.