June 18

Something disrupted Claire's typical epileptic cycle. I can only hope its the Zonegran and its having a positive impact. Claire had one of her bad days yesterday. Although I can' say that today was great with 36 seizures, at least there was no Ativan administered since early this morning. Since I've been back at the hospital from my trip to Boise, Claire hasn't had any seizures. She just bottle fed extremely well, muscled her NG Tube out, and is cooing like she's trying to hold a conversation. Pray that all of that continues.

The hospital is working on getting us home next week. Unlike our first 3 day stint at home before returning to the hospital last time, they will be sending a fair amount of equipment home with us. We are learning how to administer the NG tube in the event Claire is on a bad day and can't eat without assistance. They will also send us home with oxygen and a Pulsoximeter Monitor for those rare occasions Claire's Oxygen desaturates. If I were to guess, I'd say we will go home on Wednesday or Thursday, when I am home for a full day from a trip to Spokane. You know by now, this can all turn on a dime. I ask that you share my cautious optimism.

The Neuro Resident has posted Claire's situation on the List Serve, asking if there have been any similar cases treated or diagnosed. We are also prepping for a 2nd opinion at the Mayo Clinic in Rochester, MN. As the plan stands now, we will do that as an outpatient. Claire's records will be sent over for them to review. In the event that we end up going there in person, it will be for a relatively short visit. As with all things, we will cross that bridge when we get there.