Johns Hopkins called. We have a date. In less than a month, Will will be admitted into their epilepsy monitoring unit (EMU) for at least one week. Longer if he doesn't have a seizure during that first week. Because they take Will off of his seizure medication while we are there, they make you stay until you have a seizure.
Nate and I have so much to work out. Because this is simply monitoring and there will be no surgery, we have decided that one of us will go up at a time. But for how many days? How do we transition? Where do Luke and Matt go? What should we do to pass the time... just waiting for a seizure to occur? We've been instructed to bring DVDs, games, toys, everything under the sun. The plan is to pool some resources and finally get Will an iPad before we head to Hopkins. This way he'll be able to stay active in his daily classroom activities through FaceTime.
We've been letting Will's hair grow out recently, but because he could be hooked up to EEG leads for weeks on end and not able to shower, we're planning to buzz cut his head right before we leave in an effort to decrease the grossness that could develop between his hair and EEG leads. We'll be able to give him sponge baths at the sink, thankfully, so that will take care of the remainder of stinky Will.
Matt's 2nd birthday occurs while we will be inpatient at the EMU. We've now planned to have it a little early, so the family can be together before our longest period of unrest yet. How odd for us to be separated for this long. At any given time there will be two little Slaviks in North Carolina, one little Slavik in Maryland, one big Slavik in Maryland, and one last big Slavik somewhere in between... holding the home life together as best as possible.
While this is what we expected and were pulling for, the reality sets in when you realize all the little details of life that have to be worked out. I am grateful that we have a few weeks to settle it out. I have to start working on the pre-approval through insurance. I am hoping that isn't too painful... but we shall see.
I need to ask for some assistance from you all. One of the things they told us is that Will will only be able to wear button-down shirts... nothing will be able to go over his head. We don't have any 5T button-down shirts, and the truth is, after this hospitalization, we won't need them again. If I can avoid buying them, I'd like to. So do you, lovely reader, have any boys 5T button down shirts to loan? Stuffed somewhere in a box in the attic? If so, could you lend them to the cause? I promise to return them, laundered and folded, once our EEG study at the EMU is over!
And just in case we needed a reminder of why we're going through all of this upheaval and soul-searching, Will had a seizure last night. We really didn't need that reminder. We knew he was "due" for a seizure soon based on his history. Unfortunately he also rolled out of bed and smacked his head on the bookshelf. Insult to injury. He's got a cut on his forehead and a lump above his shunt (of course that is right where he hit his head), and spent most of the day exhausted from the seizure the night before.
So while I am grateful for the time to work out the life details of a potentially long inpatient stay with Will, I am also anxious to get him there... to finally figure out what is going out and what can be done to stop this. To finally give him the chances to develop that these seizures have been stealing from him.