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Matthew and Joan came home one month (to the day) after his surgery.

As I was nearing the hospital Joan called me and said “Everyone is waiting. Park the car in (such and such a place – illegally, by the way) and run! They are about to start the “parade.”

I made it in time (totally forgot to wear a mask) for the celebration. He was not walking nearly as well as he had been because he had pulled a muscle that morning, but I was so proud of my boy just the same. What a celebration! The Seashore House Rehab does it right.

The reason for the early discharge is a sad one. As I write this, Joan’s mom is nearly home (her departure is imminent) and is no longer able to have visits. We’ve had some very precious times with her and she has been able to say her good-byes. I’m very thankful for Joan’s instincts regarding the timing of things and her insistence that it was time to leave CHOP.

The days are very full and very emotional. We have moved constantly from palliative care to comforting dad to entertaining family who wish to say good-bye to physical therapy for Matthew to Kari care (which includes trying to fine-tune the ketogenic diet as she has had some breakthrough seizures). It is easy enough to move from task to task (duty demands it). It is not so easy to switch to the appropriate emotion for each activity.

Matthew continues to make progress. Joan was told it would be three to six months from surgery until he is back to where he was prior to the surgery (in areas related to mobility). Cognitively he has progressed beyond where he was previously. And, we’ve seen no seizures.

Matthew needs breaks, especially with the atmosphere of grief from which we try to shield him as much as possible. He knows things are not normal and he has questions about heaven. Yesterday we had a great time at Dutch Wonderland. I was able to maneuver him from the wheelchair for several rides.

Thank you for your prayers!