It was another LONG trip to Philly and back yesterday. Aaron as usual stayed awake for the vast majority of the van ride (11 hours on the road) as he just can't stand NOT looking out the window. I can hardly blame him. If I had spent an entire year sitting in a shed/empty room with only moaning boys to watch, I would not want to close my eyes either. But it makes a long day even longer because as long as he is awake, I can't sleep either.
He did fabulous at the hospital except when the OT put on new hand braces that he will have to start wearing. Ugh! He did NOT like those braces and it is going to be a process to get him to wear them all day everyday. We will definitely be starting out s.l.o.w.l.y.......
His FAVORITE part of the day was hanging with the Rieben clan.... all eight of them. My camera battery died so I didn't get pictures... bummer! We spent part of our time with them squeezed into one examining room. It was chaotic but fun. I was able to spend time connecting with their mom and several other Moms. Those moments make the trip so worth the effort.
At this point, by choice, we are going to take the summer off from treatments/surgeries for Aaron. Treating his arms/hands is going to be a long process. The first step is surgery on his right arm to increase his passive range of motion. Right now neither of his elbows bend and they are both turned so even if they did bend, they are angled in the wrong direction. So he is facing surgery on his right arm that involves transferring a tendon and cutting and rotating the bones. We want our son to have the pleasure of a summer without casts and pain and long trips to Philly. So we are taking a breather. We will concentrate on doing all those things that our little fugitive has never had a chance to do before. We will face the next surgery with some happy memories under his belt!
Please keep Rob's dad in your prayers. He came through his surgery on Monday doing well and was discharged on Thursday but took a turn yesterday and is now back in the hospital. He is feeling quite miserable. I am typing this from his hospital room.