It was a big weekend for Harper (and Mom)… she took her first airplane ride!
She was super excited about it and had a blast, but unfortunately the destination was not so exciting. We had to return to Baltimore for follow-up testing regarding her ESES diagnosis. Since we were just there a month ago and the trip took about ten hours in the car by the time we made all the stops along the way, we opted for the one-hour flight this time. Yes, it was more expensive. Yes, it was a bit scary to maneuver the airports and big city alone with her. But all in all, totally worth it for her comfort!
Harper had an overnight EEG, a re-evaluation of certain items on her neuropsych testing, and a follow-up with the neurologist. The results from everything have been somewhat complicated.
We received the full report from her testing last month, which showed a lot of concerns developmentally. While she has made great strides and progress in so many ways, there has unfortunately been a lot of regression in other areas. I won’t lay out all of those details here, but there is a lot for us to process and consider, and decisions to pray over.
As for the ESES, the good news is that the medicine has decreased the intensity of her seizure activity in her sleep, and there were improvements in one area of her cognitive testing. However, there is a flip side to that. First, while the seizure activity is less intense, it is still at the same frequency, and the testing indicated that her memory is still regressing instead of improving as they had hoped. The next solution would be higher doses of the medicine she’s on- but we just had to decrease it because of the side effects.
We are going to instead try weaning her off of her original medicine to see if perhaps the combination of the two medicines is the cause of the severe side effects we’ve seen. This will be a two-month process, and will be re-evaluated if her daytime seizures start again, but if it goes well, we will then look at tackling the ESES more aggressively with the other medicine.
At times this journey seems so long. There is so much trial and error. There are so many questions without definitive answers. And oftentimes there are so many answers we don’t want to hear. There are times that I get angry about it, and times that I just feel sad as I wade through all of the information that comes at us. Sometimes I wonder how after over six years of this road I can still trust and believe.
Here’s how- the faithfulness of God. I see His faithfulness in every little step we take. Every milestone she makes. Every day she wakes me up with that sweet smile and too-tight hug. Every reminder she gives me and every tooth she loses and talks about infinitely. Every word she learns to read. Every song of praise that leaves her lips. Every prayer she says and every time she raises her hands in worship. Every story she tells with such animation. Every time she falls but bounces right back. Every giggle, every dance, every time I hear her little voice say, “Mommy.” Every time I watch her play with her dolls or be brave or try and try again… it is all because of Him.
And because I’ve seen His faithfulness in all the small things, I know He is faithful in the big things.
He who calls you is faithful; he will surely do it. -1 Thessalonians 5:24
Let us hold fast to the confession of our hope without wavering, for he who promised is faithful. -Hebrews 10:23
For great is his steadfast love toward us, and the faithfulness of the Lord endures forever. Praise the Lord! Psalm 117:2