Update, June 1

Beautiful days…the last couple weeks have been filled with beautiful days. We returned from Florida last Sunday, one week ago. While in the hospital Ethan often asked if we could go to Disney…he’s never been, he wanted to go, so that’s what we did. We had 6 fun-filled days at Disney parks, and Sea World. They all had a great time, and Ethan held up particularly well, going all day in the heat and sun. Parks, dinners, swimming…lots of fun! Ethan loved it, and of course is already asking when we can go back! Our family, friends, and community’s support throughout last year made this trip possible. It wouldn’t have been easy for us to do a trip like that without the support you gave us. Thank you, thank you…

And this past week at home has been gorgeous weather. Yancy and I are still so very thankful to be at home right now. Given that we were in the hospital throughout this gorgeous time of year last year makes it extra special, and we’re not taking it for granted. Ethan wakes early and plays all day. We keep busy at home and around town during the days, catching up with people we haven’t seen in awhile, gardening, playing outside, etc. I would say that fatigue shows faster than usual for him, but he doesn’t let it slow him down. He continues to keep up with the fast pace he sets, even if the grumps set in.

In the next couple weeks, soccer and baseball conclude, Em has a dance and piano recital, they ride in the kids version of the Pan Mass Challenge. Lots to look forward to. We look forward to many sunny beach days ahead, quiet summer mornings, late summer nights, spending more time with friends and family.

Ethan’s due back at the Jimmy Fund Clinic on Wednesday, June 25. We continue to have such great hope, and cherish each day at home, together…