Harper sends love from Duke on this dreary Thursday afternoon.Here’s our latest update: As you can see from these heavy eyes, someone is tired. It’s tough to sleep in a hospital, particularly with all this garb on! Harper did great yesterday, being very patient and brave through getting attached to all the monitors and getting an IV placed. She had a calm night with no seizure activity that we noticed.
We met with the entire neuro team this morning. The plan for now is to just keep waiting. Given that she’s had so many seizures lately on all of her meds and the fact that without meds her seizures get out of control quickly, they are hoping to catch some activity without weaning her off of anything just yet. However, her daily medication may be adjusted starting tomorrow evening if she doesn’t have a seizure.
The head of the neurology team also explained why this study is so important. Harper is already on pretty good doses of two anti-seizure medications, yet every few months she starts to have seizure activity again. Basically, at the rate she is going, we face the risk of medicine being ineffective. They need to see if she will be a good candidate for surgical options. If they can determine what area of the brain the seizures are coming from, they will know what options are available. Harper has a section of her brain that is dead, and if the seizures are coming from that area, they could possibly remove that portion of her brain completely.
These are hard options to think about, but we’ve always known that we live in the unknown- at least to us. But we serve the One who does know, and we trust His plans for our girl. Please continue to pray that the doctors will get the information they need and that they’ll have wisdom from above in choosing the best treatment options now and in the future. And pray for a cranky Harper who is growing weary of wires and monitors and ouchies! We will update more when we know more ❤