Spring Update 2019

Will with his new wings from the American Airlines pilot

Our trip to CHOP was brief but busy. A couple of notable things to mention were that Will’s OT and PT had a plan for him when we checked in. The moment we arrived at the clinic, we were able to attend the seating clinic to view some equipment. Not only that, but our OT made Will some resting hand splints for Will to wear when he sleeps or is just hanging around. Without the use of the splints, he will develop some tightness in his hands and wrists, limiting his range of motion and eventually cause him pain. My favorite part was that the OT had read this blog and was familiar with our big family. We are always so impressed by the providers at CHOP. They are efficient and passionate about their patients, and it shows!

Resting hand splints

Will hasn’t been sleeping well for six months, and it has been trial by error with medications and sleep techniques to try to squeeze in some zzz’s. His neurologist thinks Will is having breakthrough symptoms and decided to increase his nighttime dose of Baricitinib. Last night he only woke twice but slept more hours than he has in months. Winning! I am hoping for more nights like that!

PT assessment
Happy Will

Our air angels made our trip possible again this time by giving us the gift of travel. When the weather was unfavorable for flying on Wednesday, the pilot made a donation for our commercial flight. We flew to Philadelphia and were tucked into our room for the afternoon courtesy of The Kolbe Fund. Our flight home was moved to an earlier time because of weather patterns, and we met another gentle soul who wanted to know all about our family and Will’s condition. We enjoy talking about Will and his journey because when that little boy locks eyes with these strangers, amazing things happen. I believe that without words (our nonverbal child), tells them “thank you” with his soft brown eyes. We feel grateful and blessed by each of these interactions. The pilot from American Airlines gave Will his wings as a souvenir…see, air “angels.”

Patient Airlift Services pilot William Alderman’s plane.

We will be traveling back to CHOP in June for a 3-day stay. We have begun the process of searching for affordable room rates and manipulating our work schedules. To see how much Will has changed since beginning the medication offered by the program at CHOP makes the rest worth it.


Thank you for supporting us along the journey and following along. We love to share Will’s smile and giggles.

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