It took me a little bit to process that change. It was a little bit harder because Joyanna had a hard morning this morning. She was very tired. I gave her a bath and she got upset and more worn out. She fell asleep while I was finishing getting her dressed. Then she started crying while we were waiting in the waiting room and I couldn’t console her. They told me she wouldn’t have the infusion today in the midst of her crying. I lost it, starting to cry myself. Of course, I was hoping the infusion would help her feel better and at least allow her to take a good nap in the quiet infusion room. So, I was stuck for a few moments, but justifiably.
Then the doctor and nurse wanted me to explain what has been happening in detail for the last week. That drew me back together to focus on the problem at hand and how to address it to help Joy. The doctor decided to take a sample of spinal fluid to rule out infection and immune responses. (Update: Both of those are ruled out now.) She had a CT scan to rule out internal changes to her brain. The epileptologist feels like it is a manifestation of the infusion and we will need to wait and see how she responds to a few more infusions. It is not seizure activity. Some children have responded by going downhill for a couple of weeks then after the second infusion regaining their original baseline. We hope that will be the case. It seems to me as far down as she’s gone this past week that it will be almost impossible to come right back to her baseline after the next infusion.
Speaking of the next infusion, it’s going to be Friday. At least we don’t have to wait for two more weeks. The pharmacist ordered the medicine today and it is shipped within 24 hours. We’ll go first thing Friday morning to have the infusion done. The infusion center--pharmacists, doctors and nurses—is working this in however it needs to be done because the error was on the institution.
I feel like I’m getting familiar with that human feeling of weakness and lack of understanding in the moment but then experiencing the steady hand of the Lord bearing me up, bringing peace time and time again when I can’t wrap my mind around what has happened in each situation. I want you to know that if you’ve prayed for grace and strength for us, then those times I’ve felt His strength are answers to your prayers. May your faith be strengthened just knowing that He has heard you.
This is the song I’ve been singing to Joyanna for the last few days but it’s been encouraging my heart too:
Jesus Is Caring For You
Jesus is caring for you;
Jesus is helping you too.
Jesus is always there keeping you
for He loves you;
Jesus is caring for you;
Jesus is helping you too.
Jesus is with you whatever you do.
Don't be afraid, Jesus is watching you.
In the dark night, He is protecting you.
Talk to the Lord, Ask Him to make you brave,
Jesus will hear when you pray.
You're not alone, Jesus is there with you.
He can't be seen, but He is there it's true.
He is your friend; He'll keep you in His care.
He goes with you everywhere.
by Child Evangelism Fellowship