We’ve been here for three days now, and it feels like three years. Harper is over it. She’s grouchy and doesn’t like the food and has played with all of our toys and games, and all of the leads stuck on her have broken out her skin and hurt, so it hasn’t been much fun. But, she did get to see her big sisters last night and had some playtime with them, and Daddy stayed with us last night so new faces have cheered her up a bit.
Last night they took one of Harper’s daily meds down to a half dose (and left the other med as normal). About 20 minutes after she had fallen asleep she had a weird spell that we thought may be seizure related. The neurologist came in this morning and confirmed that it was a seizure, and that it actually lasted longer than we thought- she seized for a few minutes before we even saw anything.
So, good news that we finally got some data. But there’s bad news- it was nothing like they anticipated. Since Harper has a dead section of brain tissue on the left side of her brain and the right side of her body is her weaker side, it’s always been assumed that her seizures were coming from the left side. However, this seizure last night started on the right side. But then it oscillated, moving side to side and across her brain into different areas. Again, not the distinct answer they were hoping for and not what anyone was expecting.
Because of this unusual pattern and because Harper has had such large, out of control seizures in the past, the neuro team is not comfortable weaning back any more on the meds today. They want to leave her on the half dose of Trileptal and full dose of Topomax for another 24 hours and see what happens. However, they have decided that they need to see a lot more, so in the neurologist’s words, we are here for the long haul.
This is not the greatest news today. A longer stay than anticipated and the fact that much of her brain is being impacted and that she’s having seizure activity we don’t even see is a lot to take in. But, God never said life would be full of sunshine and rainbows, right? Instead He promises us that He walks with us through the dark and the unknown. And He promises that His plans are ultimately for our good. With that kind of friend by your side and those promises to look forward to, there’s not much room for fear or doubt.
Thank y’all for praying for our tough little girl and all the words of encouragement you’ve been sending our way. Please continue to pray for wisdom for the doctors, and for peace and happy moments for Harper as we keep pushing forward. ❤