It's hard to believe that exactly one year ago today I was driving my son Jackson to day care and I looked in the rear view mirror at him and he had turned blue. It was a terrifying moment in my life. You can read about this experience from my post here. Since I often get asked about how Jackson is doing, today seems the perfect day to give you an update.
I quickly learned from that experience a year ago that I am a first responder type. I react and can make decisions in intense situations. I am thankful for that as this was not the end of my need to make quick decisions on behalf of my son. We've learned now that Jackson is epileptic, but we still don't know why.
His seizures come in clusters and happen about once every four to six weeks. I believe he has petite mal seizures that present as his blood oxygen saturation dropping to the low teens, his face turns blue, he is alert but not very responsive, and becomes lethargic. They are brief now, lastly about 10-20 seconds, but they still aren't fun to experience.
Jackson has been on medication since last April and it has been a wait and see process to increase his dosage, which we've done about 5 or 6 times now. It's been just over 5 weeks since his last day of seizures. The longest he has gone without them is 6 weeks. On most days, he is a very healthy, active and happy little boy.
While we have been happy with his medical care here in Jacksonville, we are seriously considering and praying about traveling to Boston Children's Hospital to see the specialist at their Epilepsy Center this summer. If any of you have traveled to this hospital, please share your experience in the comments. I would really appreciate it.
Thank you from the bottom of my heart to those who have prayed with us, brought us meals, and encouraged us in the past year. We are so grateful.