The Month of May

This month seems to bring a lot of weight with it. Before becoming a Mom I always associated it with my half birthday. After it became Will's half birthday. But last year it became the start of a life changing diagnosis: Epilepsy.

May 18th. The day that had lived infamously in my mind over the past year. Will had 3 seizures that day. One at our new home. Two more later that evening at Vanderbilt. The next day was filled with unanswered questions an MRI an EEG and a very exhausted family. I had thought a lot about that day over the past year, and hoped to never have one like it again.

May 10th started out regular enough. Breakfast. Playing. Exercising. Holly had called and we had a good short chat. Around 10:30 I was in the living room with the boys who were being very silly and causing a mess with the water in their sippy cups. I had sat down on the couch and just worked out a babysitter for that Friday night when Will started gagging. He was on the couch by me so I tried to sit him up, but in just a few seconds we were in the middle of a full blown tonic clonic seizure. This wasn't the first one since May 18th 2010. Will had had one March 26th. Patrick had been home though. It was on a Saturday morning. We had had to administer the rescue medicine. That one had lasted about 5 minutes. As I tried to remain calm and quickly noted the time on my watch I prayed and prayed it would end and I wouldn't have to give the medicine. The time quickly or slowly? came when it was necessary to administer the medicine. My hands were shaking so badly it probably took me 30 seconds too long. But once it was given I noted the time on my watch again. Waiting. Praying. Waiting. Praying. It's not ending. Why isn't it ending?! Administer second dose. Call 911. Call Patrick. Call Mom. Ambulance arrives. Jack is terrified of the EMT carrying Will out the door. We buckle up in the ambulance and ride over. We are there for about 3-4 hours then finally released with instructions to increase Will's daily doses of anti convulsants. Two Happy Meals and chocolate shakes later, thanks to Nonna, things seem to be improving.

Patrick worked from home on Wednesday, and Thursday me and the boys ventured out. A trip to the library, then to target. Everything seems "normal" again.

Friday morning I'm awakened to another seizure. It lasts longer than 5 minutes and we must administer the rescue meds. Thankfully the meds work this time and the seizure soon ends. The rest of the weekend passes peacefully but Will starts having moments where he yells out and loses muscle tone in his body and falls to his knees a lot.

In addition to the medication Keppra, the next week we started trileptal and seizures increased in a BIG way. We then moved on to topamax, and depakote The potential side effects of the last 2 were enough to keep me praying near constant. We now are unfortunately familiar with a wide range of different seizure types: Tonic Clonic - the violent shaking seizures, Myoclonic- Neck loosing muscle tone or jerking of arms or hands/fingers, Atonic or "drop" seizures - Losing all muscle tone in the body and instantly dropping to the floor (These are responsible for more busted lips than I can count, bruises all over his face/body, and a chipped tooth), and Absence -staring spells.

Over the next 5 weeks things only intensify to the point where Will stops talking to us, and days go by without him smiling. Naturally his anxiety is through the roof and he wants to be held 80% of the day and needs someone sleeping with him through the night and during naps or he won't sleep. And if you didn't know sleep deprivation = more seizures. Patrick and I are functioning in survival mode. The constant worry with Will about trying to protect him and find something that will help tame the 100-200 seizures a day consumes nearly every thought, prayer, and action. Yes, for the past 2 years now, I hate the month of May.