A Rainy Wednesday. March 4, 2020
Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Why does it always seem like it rains when you hear news you don’t want. It’s in the movies, it rains during those dramatic, sad scenes. Rain signifies bad news. A gloomy, yucky day. Well our day wasn’t that bad, but we didn’t hear the news we were praying for.
Today we met with Dr. Boydston from Children’s Hospital Of Atlanta. He’s a neurosurgeon. Our main concern was Walt’s head sutures. They are still very prominent and overlapping, you can see them easily. We were told it could be one of a few reasons:
1. The sutures are fussing together causing the brain not to grow.
2. His brain isn’t growing therefor not pushing the bones out to smooth out.
3. There’s no issue and needs more time. This was the option we were hoping to hear.
Dr. Boydston does not think his sutures are fussing together yet. He said he’d be surprised if they were. He’s ordered a CT scan to confirm it and get a better look at the sutures. However, that leaves us with the other option, his brain not growing. He’s speculating that based on his injury, that his brain isn’t growing like it should be. Walt’s brain had a serious injury to it, so there’s a lack of brain mass and volume.
Today was hard. The news was hard to hear. That’s what makes this rain today seem so sucky. It was hard to hear that the doctor is speculating that Walt’s brain isn’t growing at the rate that it should to push the bones plates out and to smooth the sutures out. But he didn’t say that it wasn’t growing. He is speculating that due to the extent of his brain injury and damage, that it could be growing slower and is just smaller. That he has loss of brain mass and volume. Walt’s proving to us daily that he’s growing. He’s eating well, getting bigger, cooing and squirming around.
We asked Walt’s neurologist here in Columbus for another MRI to be done to see if there are any changes or growth in volume. We also asked for another EEG to look at seizure activity and if his new medicine, Keppra, is working. He said that it’s still too early for a new MRI, the brain needs months to show change or growth. Needs more time than two months. Walt would also have to be sedated for the MRI and he doesn’t want to do that if it isn’t absolutely necessary yet. Also, people with epilepsy will have EEGs that are normal, it won’t necessarily show seizure activity. So we are going to have to wait a while longer for updated tests.
Brians thought behind it is that he almost wishes the bones were fussing together. Then there would be a problem and a solution. The problem being the bones are fussing and the solution being surgery to fix it. In our case, there is no solution. There is no solution to fix his injury and brain damage.
The first thing I did when I got home was hold Walt and pray. I went into a prayer of thanksgiving. I’m thankful for a God who loves us and who has given us everything we already have. He has allowed Walt to still be with us. Walt is growing. He’s squirming and cooing. Brian pointed out how much better his left arm is already (in the NICU he wasn’t hardly moving it and there was a huge knot on his elbow; now the knot is barely there and he moves it just as well as his right arm). I’m thankful that he’s eating when they thought he shouldn’t have been able to. I’m thankful for the news we heard, even though it wasn’t what we wanted. God’s got plans for Walt and I’m thankful for allowing us to be a part of it.
I’m asking for big prayers. That Walt’s brain does continue to grow. Even if it’s on his own schedule and time, that it will grow. The brain is a miraculous thing and I pray that everything will reroute itself. That he will learn to pick his head up, sit up, roll over and then move on to crawling, walking, running and jumping. I pray that his brain will reroute all of those movements and allow him to do them. Our prayer is that he will continue to defy all the odds that are stacked up against him and show the world how miraculous our God is.
We serve a big God, who’s bigger than anything we could ever imagine.
One thing that I tell my students all the time is, “This doesn’t define you.” A bad grade doesn’t define you. Second grade doesn’t define you. But it’s part of your story.
This is part of Walt’s story. Today doesn’t define him. God’s actually already written Walt’s story. Walt’s just carrying it out. Walt will tell us more. That’s the hardest part, the waiting. Waiting to see what Walt can and cannot do. Walt will tell us what he can do, not a MRI, not one doctors opinion. Although, we are grateful for doctors. I’m grateful for God giving them their abilities. He was doing his job, telling me what he thinks and then ordering some tests to confirm and go from there. God’s defined Walt and that’s all that matters.
I’ve learned that we don’t live for one opinion. We don’t live for the world’s opinions. We live for God. We know that one opinion doesn’t define Walt.