Wednesday, October 22, 2014

Heart Thoughts-The Seasons Change

These past 3 years, I've struggled with each changing of the seasons. And it's always been a bit of a mystery to me. Why do I struggle with feelings of sadness and anxiety, with the simple passing of one season into the next? Recently, though, I may have narrowed it down.


The passing of summer into fall this year has brought with it my normal pensive thoughts, and this time I realized why. No matter what is going on in life, what is happening in or around you, the seasons change. There is nothing that we can do to stop it or slow it down. It simply happens. In one aspect, it is God's grace. He keeps things going.

But it represents for me the fact that a time in life is coming that I simply don't want to face. Having a chronically ill child whose condition will eventually take them far too early in life makes you realize that your time with them is far too short. And when that time comes, there will be nothing that I can do to stop it or slow it down. It will simply happen, just like the changing of the seasons. This season of my life will change, and I will be forced to live in the next, whether I like it or not.

I love fall and the beauty that the colors bring. But I know that winter is coming, with its bitter cold and lack of color. Everything will be slower, darker, colder. And so the challenge for me is always to savor the beauty that is here and now, and not fear what is to come.

And oh, how I long for the day when each moment can be treasured with no taint of sorrow or sickness or pain. When each moment is pure joy and worship. Until that day, I will strive to live in hope and expectation, trusting in His goodness to sustain me through these changing seasons.

"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." -Psalm 112:7

Sunday, October 19, 2014

Update-med increase

After dealing with some yucky seizures a few weeks ago, we increased one of her seizure meds (Keppra). Since she's gotten so much bigger lately (up to 36 pounds now! That's up from 24 pounds in February!), we realized she could use more medication. So, we increased her night time dose to start with, which has seemed to help some. We are still seeing more seizures than we'd like, but no big, long-lasting ones like a few weeks ago. At the end of last week, we went ahead and increased her morning dose as well, in hopes of further reducing how many seizures we are seeing. Let's pray that it helps, and we won't see as many!

Thursday, October 9, 2014


Last Monday evening was a scary one. We had been out as a family with some friends for dinner (at a place where kids eat free-woohoo!). On the way home, my oldest said, "I think Waverly is seizing." 

Sure enough, when I looked back at her, she was. But that's not uncommon for her, after being out somewhere. So I continued to drive home, since we were only about five minutes away at this point. But something in me knew it seemed a little different. So I drove the rest of the way home with one hand on her legs (the best I could reach and "keep an eye on her" while driving). 

As soon as we walked in the door and I got her in, I could tell these were hard seizures. She wasn't having breathing troubles, but in between each spasm and seizure she continued to twitch and tremble. She's never done that before and for that long. 

After a few more minutes, I could tell she wasn't coming out of it. So we got her rescue medicine and had to give it to her. Thankfully if worked in a matter of minutes. But of course afterward, she was completely out of it. I hated how she looked and acted-completely drugged. 

At this point it was bedtime. Instead of taking her to the ER we felt like she'd be better off at home and resting, as long as she didn't seem too compromised with her breathing from the meds. 

She's had a few episodes of harder seizures since that day last week, especially on Friday evening. But thankfully we've been able to avoid the rescue med again. 

Please pray that those seizures stay away and that this isn't becoming a "new normal" for her! 

Here's a happier picture from a couple days ago: