Well, this week started with not-good news, and now it’s ending with not-good news. But let me just say this- I’ve heard the true Good News, and I know how this story ends, and one week of not-good news isn’t going to change that!
Now that I’ve made that clear, I’ll share the report we got in Baltimore this week on Harps. From a cognitive standpoint, she seems to have remained relatively stable in many areas over the last couple of months, but the final scores are not in. However, it is clear that her memory is being greatly impacted and there is increasing concern regarding her language processing and comprehension, so there will be more in-depth testing in the upcoming weeks.
The EEG results were upsetting. The ESES is still at 100%, indicating that the treatments have not yet been effective. She did say that sometimes it can take more time to kick in so not to give up yet, so we will keep pressing forward. However, the EEG showed new seizure activity that they’ve never seen in Harper before- new types of seizures in different parts of the brain. This has caught everyone off-guard and they aren’t sure why it’s happening, but it does confirm some of the activity I thought I was seeing and wasn’t sure about.
Our neuro in Baltimore is now reaching out to Duke to see about changing some things- a possible new medication for these new seizures (with some new, unpleasant side effects) and seeing if they can arrange another EEG when we are there for Harper’s next round of treatments in December. We’ll also get the more in-depth neuropsych testing done in the next couple of weeks to see what needs to be done to help Harper with her memory and language processing.
Right now I feel a bit numb and we are just in the throes of “go-mode.” Eventually things will slow down and I’ll process it a bit more and I’m sure I’ll be angry and frustrated and sad… but through it all there is peace in knowing that while we may be caught off-guard and the doctors may be caught off-guard, my God is never caught off-guard. He’s always known and He’s working all things for the good of those who love Him 💜