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: 

Wednesday, September 10, 2014

Heart Thoughts-Is this the name...?

I first heard of it on a radio segment at the beginning of the week. A bad virus that was going around. I didn't think much of it until later that evening when I saw a link online, and read about it being a respiratory virus. As I read that first article, my stomach turned into knots.

"Is this the name of it? Is this what will take her from us?"

I couldn't help but be gripped by fear at what had become a monster staring at me from my computer screen.

I have cried several times since then. The fear of this virus, that starts just like any other cold or sniffle but turns worse quickly. For children like Waverly, this is bad news. And I am scared.

But I am seeking to remember Who holds her, Who has numbered her days before she was even a twinkle in my eye. He loves her and His plans for her will be accomplished, whether that includes this virus or not, as well as the outcome of that.

Lord, help me trust You. Hear

Wednesday, August 27, 2014


I'm so happy to report that sweet Waverly has been improving every day! She's been on her two antibiotics (one for UTI, one for pneumonia), but she's been stable at home and we are so thankful that she didn't have to stay at the hospital to receive treatment for this! She slept most of the weekend as she was recovering, and was on her bipap all day Friday and Saturday. Since then she's done well on her nasal cannula, and hasn't needed much oxygen through that, and is breathing much easier. She's continuing to cough up stuff, which is actually good to be getting it out of her lungs. Thanks for all of you who have checked in with us!

Thursday, August 21, 2014

Uti and pneumonia

This is how we spent our day. After a rough night with fever and one throw up, the doctor wanted to see her and then sent her on to the ER for X-rays, blood work, etc. She has aspiration pneumonia and is starting an antibiotic for that, in addition to the one she started last night for a new uti. Thankfully her oxygen sats have been ok although she's had a fever and high heart rate and respirations. She definitely feels bad but wasn't acting too sick so the PICU doctor agreed to let us take her home and treat her here. If she gets worse we will just call him and go straight to be admitted to the PICU. Please pray that she stabilizes more tonight. That her breathing rate and heart rate slows down. And that her oxygen remains good. 

Sunday, August 10, 2014

Heart Thoughts- Siblings

They were playing yesterday on a rainy day. Throwing the ball and laughing away, with the typical sibling squabbles that came up occasionally too. And I looked at Waverly laying there in the next room on her mat, and her eyes were talking to me. She even made a few noises. Whatever she was trying to tell me, she was very serious and intent. 

"You want to go play with them?"

So I disconnected as much as I could, hoisted her up, and we went to her siblings and played ball (yes, in the house!). They shared it with her and rolled it to her and helped her throw it. 

Then, the fighting happened. Waverly got selfish and kept holding the ball away from them. "Waverly, give it back!" 

And they'd take it out of her hands. And they'd play a bit more and then "she'd" do it again. She even hit her sister a few times! 

"Waverly, you need to share and be kind," I'd remind her. 

And I had tears in my eyes. Most mothers would give anything for their children NOT to fight and squabble while playing. Goodness knows I could use a break from the older two getting into it about almost everything all the time. 

And even though I was "making" her cause a little trouble, I had to do it. At that moment I longed for things to be "normal". For my 3 year old to want to tag along and play with her older siblings. To have them laughing and playing together, like they were. But I knew that a little squabble would be part of it too. That as a typical 3 year old, I'd have to remind her to be careful and to share and to not be too rough with her sister. So I had her do those things too. Normal siblings play together. Normal siblings fight some too. And for a moment I had a tiny glimpse of what it could be like. 

And they all had a blast.