I’m writing tonight from our hotel in Baltimore, which has become oddly comfortable at this point. It has become our home away from home this past year, the perfect location between the airport and the big city, and since I’m not much of a big city girl, I’ve learned that once I find a comfortable spot, I better stick with it!
It has been a strange trip this go round with the whole Covid situation. Flying was different (and this mama ended up airsick!), going out in public has been different, visiting doctors has been different… we were so blessed that Kirby could actually travel with us this time, but then he wasn’t allowed in any of the appointments with us! The doctors were all behind shields and masks, and the visits and testing were cut short to minimize exposure.
Harper had her neuropsych testing at Kennedy Kreiger yesterday, a process that usually takes 4-6 hours, but they scaled it down to just two hours. This testing looks at how her brain is functioning, how she is processing things, how she is learning, her IQ, etc. Last year she had a full evaluation and the feedback was not very positive at all. Because of Covid I did not get to meet with the doctor to get feedback, but we are supposed to have a zoom conference in the next couple weeks to go over her findings.
However, when we met with our neurologist today, she did give us some news from that testing- the initial impressions are that Harper has made tremendous gains since January! She said they saw improvements in her processing speed, her overall IQ score, her reading, her math… basically, they were wowed by what her brain is doing and the strides she has made in the last six months.
A lot of things changed for Harper in the last six months to affect this. She did the medicine to treat the ESES that worked well- which is the one we just recently had to quit. Because of health issues we had to pull her from the classroom and start homeschooling (before Covid), which means she’s had one-on-one instruction for the last six months. And she has had more therapy in the last few months, currently four different sessions a week. She has also continued to have all of her prayer warriors covering her in prayer!
We have some next steps. Harper is now down to just ONE medication twice a day- that is HUGE for us!! Just weeks ago I had a board posted in my kitchen that was full of all the different medicines and doses and times that we had to go through daily- and now it’s just one! That is amazing to me. They want an updated MRI to measure her brain cyst and the fluid on her brain, which will need to be done through her neurosurgeon at Duke in the next couple of months. Then in the next 3-4 months we have to come back to Baltimore for an overnight EEG and follow up with our neurologist. It is too soon to tell if the ESES is coming back now that she’s off the treatment, and the only way we’ll know for sure is through the EEG.
For now, we are just going to soar on this positive feedback. It has been so long since we have gotten so much positive, so we will just soak it in and thank God for it! One medicine and so far good impressions on the neuropsych testing, so let’s fly high on that this week!
But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:31)
Thanks for your prayers, friends 💜