Thursday, February 23, 2017

Too much to update

So, come to find out, the Blogger app I had been using is no longer available on the iPhone and that's why it kept crashing when I would try to update. As a result, it's been months! No promises on when pics will be uploaded (because I know that's the most fun!), but for now, here's an update.

What a few months it has been... the last update mentioned continued struggle with seizures and a new treatment for her recurring UTIs. Shortly after that update, we had a major discovery. We found out our home was affected by MOLD. We immediately got Waverly out of the house, as we suspected it was a big culprit in making her seizures so hard to control. Unfortunately, within a couple days, she ended up in the hospital from status epileptus (seizures that won't stop). She was in the hospital for several days as a result. When she was released, we remained out of our house, as we then had to pursue mold remediation. We ended up being out of our home for 6 weeks, over Christmas, while the mold was being removed and our home made safe. We now have a $20,000 bill to pay for the work, and our home still needs more work/repairs as a result.

It's been hard. So hard. The house we bought pretty much FOR our child with special needs ended up being very unsafe for her (and all of us). Thankfully, everyone else had been mostly ok.  I seem to be the one who was most affected with my health by terrible migraines and neurological symptoms. (I had an MRI in November to check for brain tumor and MS because of my symptoms. Yikes! Thankfully, that was clear, and once we discovered the mold, assume that my issues were caused by that.)

Waverly still has continued to struggle with seizures and other issues. She ended up very anemic a couple of weeks ago and had to be hospitalized for a blood transfusion. An iron supplement lead to major crying and discomfort for days on end. We are still trying to figure out how to best help her.

And most recently, we had our well pump go out and then discovered there's a leak in the piping and therefore need to run all new pipes from the well to thour house.

And these are just the highlights of the trials we've had the past few months.

Y'all, it's been tough. So tough. But God is good. So good. We have a sweet friend who set up a Go Fund Me page for us. Because, aa much as we resisted, we realized people truly wanted to help us, and we realized we just can't do this all on our own. Feel free to share with others. We are praying. We are trusting. We are hopeful for the future. But we are weary. And ready for a little break. We know our blessings flow, more than we could ever deserve.

Tuesday, November 29, 2016


I am so sorry it's been so silent on here! The Blogger app on my phone keeps crashing when I try to write a post, and truthfully, I am rarely on the computer these days! (The benefits and vices of technology literally at our fingertips on our phones!) And since I prefer to do posts with photos, and all my photos are on the phone.... Well, you get the point.

Also, there's not a lot new going on to update about as far as daily stuff. Waverly continues to struggle with seizures, and we don't have them well controlled still. But we are managing ok with them. It would be great to see her go an entire day or even an entire week without one, though!

We have been doing gentamyacin bladder washes every other night, and that seems to have helped to keep her UTIs at bay a little bit. So we are thankful for that.

In the meantime, I have tons of fun, cute pics to post of her. I will keep trying to see if the app will work, or see if I can get pics on the computer and then post! Thanks, as always, for your prayers!

Saturday, November 26, 2016


How great are these Halloween costumes infound this year?!? 

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.