I remember getting the big packet in the mail prior to Bub's first appointment. We read it all, looked it over, and talked through it. We knew when we found that section that the description fit Ayden's needs. His stroke a year earlier had left damage in his right hemisphere. The damage left many deficits and difficulties, but Epilepsy was and still is the worst. When we set our appt. in Cleveland Ayden was having and average of 100 seizures a day. He was irritable, moody, and tired. How do you even consider disconnecting or removing half of your child's brain. Was it EASY? If you spend just a few days, weeks, or months watching your child slip away, suffering daily, and know that the only thing that can help is a "radical brain surgery" the answer to that question becomes obvious.
Ayden had his first Hemispherectomy (functional - disconnection/partial removal) was October 29th, 2009. Ayden celebrated his second birthday in the EMU post op. It is ironic how both his hemiversary and birthday are so close together. There was the moment when I saw my boy, without the static/cloud in his eyes. The first time in a long time that he was truly there. It was like a whole new birthday for him, he was really there.
Has it been a Happily Ever After...no, BUT the decision is never debated or doubted. It was not the start of his journey, nor the end. It was however, a very important event and so successful it does need its own celebration each year. "Seizure Free for ______" won't be a part of this years FB post or tweet, but we are still in a better place. We are surrounded by an amazing Hemi Family from all over the world. The insight and support is priceless. There is a look I have exchanged with many loved ones over the past few years. It is the "Did you see that? Was that a S-?" look. That look has happened within the last few months, but Ayden is doing really well otherwise. Today, we are going to focus on some good news and pray for the rest.
Friends! After school Care! I Make Bubbles!
Ayden absolutely LOVES his friends at school and this year, and aftercare has been a blessing in so many ways. He is doing very well with his academic progress and I love to hear the occasional story of him "fitting in" with the first grade line. :) My favorite scene this year is watching him after-school playing basketball in the gym or on the playground. It is not just parallel play but real interactions. It is times like this that I get excited about the possibilities. Potty training has still been up and down, but the fact that we are working on it makes me smile. it will comes in time, Ayden's time of course.
Prayers for the "episodes" we have seen, and prayers for continued progress and celebrations.
All of the above would not have been possible without all our prayer warriors. Bubba's story is "To Be Continued" . We cannot wait to see where he goes.
If you have an extra 4 minutes check out Bubba's video below:
