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

Update



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.


Thursday, July 21, 2016

Summer smile

Psalm 121

I sat outside last night and read this to/with Waverly, and saw it in a whole new light. To read about how God watches over your life and protects you to a child with a terminal condition... No, it doesn't make any sense. Yet I know it's true, because it's in His Word. I will never fully grasp the ways of God, because (this is me being honest right here), it simply makes no sense that a child like Waverly should suffer as she does. But I know I can trust Him, that He lovingly cares for her and holds her in His Hands. And that last verse? He watches over both her coming and her going. Y'all, it's hard not to live in fear of the future when you know that time with your child is limited. I've never read this verse in this way before, but it struck me. That He was there watching over her when she came, and will watch over her when it's time for her to go. I often live in fear of that time, but after reading this and seeing it in a new light, I know that I can trust Him when that time comes too. 


Tuesday, June 28, 2016

In the dark


Sitting here in her room in the dark, by the light of her ventilator, watching her because although nothing is obviously wrong, she's just been 'different' the past couple of nights. I don't know if she's just getting her days and nights mixed up, if seizures are to blame, or if there's something more. But this, this is part of what it means to be a special needs mom. This is the part that rarely gets shared, one reason being that it's simply too dark to even hardly see. It's moments like these that can seem the loneliest, when no one else is up or realizes that this is a regular part of what it means to care for your child. It's moments like this when often, the night turns out fine, but you know that one day, it won't be. And it's times like this that I think of all the other people who are in similar situations, who feel alone in the darkness, and pray that they realize they are not alone, and that they know that someone somewhere is praying for them. 

Sunday, May 8, 2016

Five!!!


What a special day today is! Our sweet girl is FIVE!! Today is also Mother's Day, which it was also Mother's Day the year she was born as well! We are so so thankful for our sweet Waverly, and to be able to celebrate her birthday once again with her! This past year has been so enjoyable with her. She has really grown and seems more like a "kid" in many ways than a "baby". (Although she will always be my baby!) 

Some highlights of this past year include school once a week at our house, therapies at home as well, going on vacation as a whole family to Great Wokf Lodge, and of course nightly snuggles. She's remained pretty healthy, and has avoided the hospital pretty well. She got her gtube replaced with a GJ tube, got a new wheelchair, and can stay on her stander for up to an hour! One big accomplishment this year was receiving the title of Little Miss Wheelchair Virginia! She was so excited and proud of herself! 

Some of her favorite things are still trees, wind blowing, music, squeaky noises, silverware clanging, and of course her family. 

Health-wise, she's had a fairly good year. Her biggest struggles have been UTIs which we are still trying to figure out. She's also still struggling with seizures. 

We are starting to realize we need a wheelchair van for her soon. Her new wheelchair is too heavy for me to lift into our van by myself, and we need a safer way to transport it too (with official tie downs). So we are hoping to work on getting one for her soon (if you know of any resources, please let us know!). 

Once again, thank you to all of you who faithfully pray for our girl, and support our family. We couldn't do this without you! 




Making her "silly face". 




Bedtime prayers with daddy.