Well, friends, we haven’t posted in a while again, and that’s always a good sign! Harper started a new medication in January and it was our most successful transition yet. In fact, we made it right at three months without a single hint of a seizure!
Unfortunately our streak ended this week. She has had five episodes in seven days, each one progressing in intensity, and all coming completely out of nowhere with no warning. Today was the fifth, at her cousin’s birthday party while Mom and Dad were exploring in the woods with the older kids. We got our cross country workout in as we raced back to the house- and this mama realized how out of shape she is 🙈. This episode started like the others this week, but did actually go into a full blown seizure. Fortunately it ended on its own and did not require rescue meds.
We are back to complete frustration with our current neurologist as we have not been able to get a response this week (after she used the wrong name and sent medicines to the wrong pharmacy), but our appointment at Johns Hopkins isn’t until June when Harper is out of school. That means we have to try to deal for a little over two more months.
The good news is that we are in contact with our new neurologist and she is on top of things. She is quick to respond to our questions and has already been working on Harper’s case. She just recently posted an updated report based on Harper’s last MRI, which explained things a little more in-depth for us. She identified one large porencephalic cyst, several smaller cysts, a lot of white brain matter on the left side, dilated ventricles, and stated that she believes this is indicative of a severe case of cystic encephalomalacia (which I know nothing about!).
Between this report, doctor frustrations, and the sudden increase in seizures, I am feeling a bit dejected this weekend, but this is all part of the roller coaster ride we have been on for the last six years. I think it’s no coincidence that I opened my Bible app this evening to see this verse from Psalm 27:14: “Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” Sometimes it can be so hard to wait! I am not the world’s most patient person, and I am not really a fan of waiting.
But waiting doesn’t mean He isn’t working. It means He is doing more than I can see from my limited point of view, that He is fulfilling a purpose far beyond my scope, and that what’s waiting on the other side is far greater than this mountain we’re climbing.
So tonight I am proclaiming the words that David wrote just before that fourteenth verse… “I believe that I shall look upon the goodness of the Lord in the land of the living!” No matter what, He is good, and we are living in His goodness, and there is more of that goodness to come.