Friday, April 10, 2015

Home!



We are so thankful that we were able to come home this afternoon. Waverly continues to have lots of seizures, but they aren't constant, so we felt it best to bring her home as we wait to try a new medicine. We ended up discontinuing her newest one that we started last month, as we suspect it may have actually made her seizures worse. But we still need to do something about the ones she's having, since they are still more frequent than we'd like. So, back to the drawing board. 

Please pray that her seizures would be manageable here at home until we can start a new med. Just tonight, she had over 30 minutes of hard seizures. (And had 10 minutes of seizures earlier today, just minutes after we were given or discharge papers, before we even got out of the door!) 

We are pretty tired from the "seizure watch"-feeling like we need to have eyes and ears on her constantly for every little sound and move. So prayers for our strength are appreciated too. 

Wednesday, April 8, 2015

Too many seizures = hospital stay


Waverly's seizures have had a sharp increase since Friday, which also happens to correspond with the latest increase of her new medicine, Banzel. On Monday evening she had a cluster of 7 tonic-clonic seizures in 20 minutes, and then woke up Tuesday and had about 10 in the first 1.5 hours of being awake. We knew she had to been seen, so we loaded her up and took her to our local ER. They checked her over to make sure she didn't have some sort of infection causing the increase. All that checked out fine, so they admitted her to the PICU to help break the cycle of seizures and work on adjusting meds and a plan. They have been consulting with her neurologist at UVA on the plan. She's had some pretty hardcore meds in the ER and late yesterday afternoon to try to stop the seizing, which knocked her out. As soon as she woke up, though, she started seizing again. Today, she's seized pretty much every time she's been awake, but has slept most of the day (from the seizures). She woke up for about an hour around 5:00pm today, but had a big 8 minute seizure at 6:00. She almost needed more rescue meds but stopped, and is back to sleeping again.

Please pray for wisdom on which medications to start/stop, for her brain to respond, and for the seizure cycle to break. Pray for rest for me here in the hospital with her, and for the rest of the family with the added stress. Pray for her doctors and nurses and other caretakers. Pray for the others here in the PICU. I don't often get the chance to talk to other parents or people up here much since everyone is in their own rooms with their kids, but pray that I would be able to reach out to those who need it, and just in general for those here.

Sunday, April 5, 2015

Happy Easter!

On a day like today, where Waverly struggles so much with hard, hard seizures, I am especially thankful for Christ's resurrection. He defeated sin and death and all the pain and sadness that comes with that and promises new life. Without that promise, this life would be hopeless and void of meaning. But thanks be to Him and His indescribable gift. We long for His return when He will truly make all things new. Our prayer this Easter is that you would know the one true God, His love for you, His grace and His salvation. 
Still beautiful, even after just having several hard seizures. 

With her little chick from Great-Grandmom. 

Tuesday, March 31, 2015

Twice Born


Wow, there is so much on my heart right now, but I'm unsure I'm able to process it all. See, today is the day before "it" all started. Four years ago, my appointment for a regular OB check up was on April 1. That was the first time a doctor voiced concern over our child. So this time of year brings all of those memories back very vividly. Four years ago today, I thought I was carrying a healthy little baby. All that changed the next day and we started a journey into this new world for us. A world of brokenness, sadness, and heartbreak, but of incredible love, joy, and blessing as well.

As we began to learn more and more about our little one, we prayed and begged God to shine His light in all of this. We prayed for Him to use us, in whatever way He wanted, to bring glory to Him and for others to know Him better because of this.

We decided to be very open about our child, and our story. I started this blog to not only give medical updates on Waverly, but to include my Heart Thoughts as I process through this life as well.

One day, our friend from college Bobby called my husband and shared how he and his wife had been praying for us. He shared with Johnny what our story had meant to them, and how God had used in in their lives to call them into ministry, to reach out to others who were broken and hurting. We were amazed at how God was multiplying our prayers in that way! But that was just the beginning of their story....

A couple years later, Bobby and Shelly would find out that they were now being called to walk in this path as well, as their unborn daughter was diagnosed with Spina Bifida in utero. They opted to undergo fetal surgery to help their baby, and are now being featured in a PBS Documentary called Twice Born.

The show airs tonight, and we will be watching, likely with many tears. It comes on at 8:00pm (eastern). You can see more on the show here, as well as previews.

God is working. We do not always know what He is doing, or what His purposes are. As I mentioned, this is an emotional time of year for me, as each year I reflect on life. But I know that He is good. Still. Four years later the pain remains, but our Hope is greater.

Monday, March 30, 2015

Stinkin' Seizures


Please continue to pray for our sweet girl as she battles daily seizures. Some days she has as many as 6, and there could be more that we aren't even seeing! I know compared to others, that may not sound like much. But with these seizures she is shaking/convulsing and it really takes it out of her. She often sleeps for several hours after having them so she can literally be in a seize/sleep cycle all day. We started a new medication two weeks ago and are working on increasing her dose slowly to the full amount. We aren't sure how much it's helping yet so please just pray for a solution and for wisdom, as well as strength for her little body. I'm thankful for the days that we still get to see her sweet smile though!  


Wednesday, March 11, 2015

Heart Thoughts: Ongoing


I just read the story of Tiny Tate a few days ago, a little guy with Miller-Dieker Syndrome from Australia who just lost his battle at only 8 weeks old. And I was struck by the article at the outpouring of support and rally cries for his family. And it hit me-this is our every day. Not to take away from his story and his family. The reality is, that for many people, this is their every day.

And then again this evening, I read the blog of another acquaintance who is pregnant with her first sweet baby, and there are many concerns with the baby. And I cried. Because I can so identify with her thoughts and prayers.

I realize I have been more quiet on here for a while now. It hit me tonight that one reason is because: nothing is really changing for us.

We live this life every day. It's become our normal, but it is so far from normal. There are days that the thoughts and concerns of my heart are almost too heavy for me to bear. There are days I mourn all the things we can't do with her, the things we can't see her enjoy. (Did you know I've never heard her laugh? I've heard laughing-type noises, but I've never heard an actual, true, full-on laugh. That breaks my heart.) There are days I am just so exhausted from all it takes to be a good mom to her, and my others, and wife, and friend, that I can hardly stand it. But then I can't sleep, because my thoughts are too numerous and my heart is too heavy.

Yes, I am SO grateful for the things that she CAN do. For the almost-4 years that we have been blessed with her! For the tiniest of victories that seem SO big to us!

But certain times, I am reminded that everyday life for us is a struggle, an on-going day-by-day struggle. We have much to bear, and are faced with it daily. And when the day comes that we do NOT face this on-going daily struggle will not be better. For our struggle will remain, only it will be in the form of grief and loss.

So for now, we praise Him. Because no matter the circumstances, He is good. His grace is sufficient and His mercies are new every morning. (Oh how we cling to that!) He is strong to bear with us, and His grace is all the greater for us.

Monday, March 2, 2015

Siblings


I love these pictures of the kids being siblings and loving each other. Can you spot Waverly in the first pic?