Cole has been sick since May 7th. Not during cold and flu season, weird with a capital W. Hasn't been to school more than a couple of days all month, so he isn't catching things from the germ factory aka preschool. Possibly caught something on the plane, something else at the hospital, something else on the plane...who in the heck knows.
After a round of antibiotics to quell symptoms of concurrent infections-sinus, ear AND eye...he is still ill. Had a middle of the night seizure for the first time in a year and a half. Had two major seizures within 6 hours of each other. More tests, more tests and no answers yet. SO-with my little adventure last week into the world of blinding migraines and sick Coley, our world has been more chaotic than normal. Which is to politely say-unhinged. I know that you were all just on the edge of your seats waiting for my update, right? ;)
I will tell you about it, before I forget the details. Like how the paparazzi came to the airport and everyone was taking pictures of Slugger. Or how Cole and Sluggie got invited into the cockpit.
Florida was it's usual self. Full of stress and serenity. Prompting lust towards places where palm trees and plumeria thrive. Silent worship of the waves and their wonder. I wish that we could live on my in-laws lanai. We could seriously be okay with being there all day every day.
We saw a lot of this....
Cole had a major seizure almost every single day we were there. Slugger did not alert for any of them. He was always ready to come over and do his job of comforting Cole though. It still chokes me up when my baby starts to wake up and slowly strokes his best friend. He looks at him like, "Oh, good. You're here."
I, myself had some undiagnosed issue which I am attributing to a malfunction of my kidneys, as they are prone to break down at the most inopportune times. I keep trying to send them love notes and tell them that I need them to cooperate, but they continue to refuse to listen.
We actually almost ended up going to the hospital, before we went to the hospital. Confused?
We called the paramedics, who would have taken us to a new hospital that did not know us and had no idea about Dravet, so they would have admitted us after being in the ER for hours. Springing the joint in time to take the 3 hour drive to Miami to make our appointment there would have been virtually impossible. Thank goodness Cole's brain got the memo, just as we were ready to pack him out the door and in to the fun wagon. Relief doesn't even begin to explain it.
While we were in Florida, Cole started having new presentations with complex partial seizures. Only his face muscles would convulse, and there were no leader seizures. He had more tonic-clonics in one week than he has had in years, maybe ever. He also had ictal vomitting (during seizure, not after like usual) and it is SO scary. You need to make sure he doesn't aspirate the vomit into his lungs. His body is not concentrating, as there is an electrical storm in his nervous system. So, while you are trying to manage his oxygen, keep him safe, stabilize his body temperature, administer meds, etc you are also having to protect his airway and your mother in laws carpet. Dravet can make a multi-tasker out of the best of them.
I feel like we are the motley crew from the Wizard of Oz, all seeking new and improved things from the Wizard. In this case, the experts at Miami Childrens. In the end, the answer is always within us, and we know all along what we need to do (have resiliency and faith). Sometimes we just need a little help to remember that we can conquer our fears with the right attitude. A reminder to have courage, use our brains and to have our heart guide us. Miami is a wild and mysterious place. The road was not made of yellow brick, but the journey to get there was treacherous. Each time we go back, I think of the Tin Man, Lion, Scarecrow and Dorothy. Hopefully we never get picked up by a hurricane, Florida's version of Kansas tornadoes. We always meet great people aka good witches while we are there, but Dravet is like the Wicked Witches....if I could only figure out how to melt it or smash it with a house. By the end of the trip, all I want is to get home. Maybe I should wear red shoes next time? :)
After almost 6 years, I finally convinced him that it was okay to go and have fun. Seriously, it is ridiculous trying to get this man to do something for himself. Pay $25 and a cable will drag you around for an hour, no boat. Happy husband. I can't even buy him dinner for that much in D.C. He had really sore legs the next day, but he said it was totally worth it...with a smile on his face. Someone even called him "gangster" for skiing when every other single person there had a wakeboard. He thought that was awesome. Points for Nik!
We got to see some of our friends, our family and we celebrated Mother's Day. Even attempted to take the boys to church, but seizures stopped us. Didn't stop me from attempting to take a picture of my dapper lovelies ;)
I guess I am kind of like Dorothy running away with Toto to save him. Claiming that she is doing every thing possible to protect her best friend when others tell her she is dreaming. However, if she never would have tried to save him from her evil neighbor, she wouldn't have had an incredible adventure. Cole is my adventure.