Sir Otis: Holidaze (i.e. it's taken me nearly a week to write this post)

Three and a half weeks out from surgery and Otis is continuing to do pretty great. We've been able to back off on some of his remaining pain medications (just Tylenol and Ibuprofen at this point, still no need for Oxy, thankfully!), and are continuing with Valium to help keep bigger seizures at bay as he continues to heal. We take him back to the orthopedic clinic for his next followup on January 18, at which time we'll learn more about gradually easing off a bit on his immobilization restrictions. It will still be a very long rehab and recovery journey from there. We have learned over the course of the greater adventure of this life with Otis that we all tend to do best when we can just remember to pause, breathe, and stay in the moment as much as possible, facing just the things in front of us, one day at a time.

Our sleep schedule is still wacky as we continue to tend to round the clock repositioning and medication administration needs, as well as Otis's normal on and off nightly wakefulness and seizure activity that we're used to. We are still trying hard to keep day and night differentiated for Otis, but have weathered a few days where Otis seems to have day and night completely flipped. Ryan and I alternate "night shifts" with Otis, switching off in the morning to give the parent-on-duty a few hours of sleep once morning comes. We are very very tired, but so relieved that Otis has done so remarkably well with this recovery. Just that in itself gives us the boost we need to keep pushing through. Well...that, and coffee. And naps where we can catch them.

We are so grateful for the people in our lives who continue to reach out and keep us connected through all of this. The outpouring of love we have received from the people in our lives has been almost overwhelming. We are so lucky. Even without a big event like a major surgery to work through, the experience of raising and caregiving a medically complex child can be a lonely and isolating one in general, and we have a tendency to withdraw and go inward, existing for long periods in survival mode. The calls, the text messages and e-mails, the notes of encouragement--even when we're not able to pick up or respond right away--really are so uplifting to us, always.