Tuesday, August 30, 2016

Bad bad seizures

This poor girl has had a rough day. It actually started last evening, with a long, bad seizure, and then many seizures through the night. Today, she's either been seizing or sleeping. Prayers are appreciated as we try to help our baby. 

Tuesday, August 23, 2016


As the summer comes to a close, we are enjoying the reprieve from the heat! I figured a little update was in order! There's not much new to report. Waverly has continued to struggle with seizures every day. She has as many as 10 (or more) that we see (and who knows how many we don't see). And that is episodes, not necessarily individual seizures. Sometimes, she will have several spasms within each episode, lasting up to 30 minutes! (One time I counted 17 spasms in just 1 minute during an episode.) 

Three-and-a-half weeks ago, we started a new medication to see if it will help decrease the seizures. So far, we haven't seen much improvement. But I'm just hopeful that we haven't found the right dose for her yet. So we still have some room for improvement. 

We also just recently checked her urine again, and it continues to grow bacteria (e-coli). At this point we assume she's colonized with it, but that makes it hard to tell when she's truly got an infection. We did decide to go ahead and treat it this time, since she's had it a while, to see if that helps decrease her seizures. After this course of antibiotics, we will then begin a treatment called bladder irrigation, where twice a week we will inject an antibiotic solution into her bladder via a catheter to try to help keep the bacteria at bay. The issue we are having is that the bacteria is now showing resistance to several common antibiotics, so any time we treat now, we run the risk of more resistance to where it becomes difficult to treat. That's a scary place to be. 

One big thing that happened this summer is Waverly lost her first tooth! Thankfully, I saw that it was hanging on by a thread and was bleeding a little bit, so I got a tissue and gave a little tug and it came right out! It's a small thing, really, but I was so glad to be able to be there and not miss that little milestone. When you have a child who really never hits many milestones, something as simple as losing a tooth can be a big deal! And it was age-typical and everything! 

She is still trying to decide what to spend her tooth fairy money on ($5 for the first tooth is apparently the going rate these days!!!). 

So that is the update for now. Nothing major, but still lots to figure out with her! 

Tuesday, August 2, 2016

It is Well

When your child is seizing for the 8th time today, with a look of awful pain on her face, and It Is Well is playing on her iPad in the background, it really challenges your faith. Yes, God, it is well. I don't understand it or how it can be well. But I know with You it is well, or it at least will be one day. Until then, have mercy on her. Help her not to feel the pain that her face seems to communicate. Give us wisdom on how to help her. Give us strength to walk with her through this and keep our hearts from breaking completely. Help us to trust You when it seems impossible. Give us faith. Glorify Your Name.