Sunday, May 26, 2019

Chilling in philly

    Since Olivia had fever Friday night, the plan was for us to be discharged Saturday but stay in the area for pain control and to make sure she didn't spike again. Once discharged, we all settled into the Ronald McDonald house in New Jersey but also wanted to pass the time. They had a showing of the Pets 2 movie and we thought sitting wouldn't be a big deal. Olivia enjoyed the movie and loved to tell Delilah all about it. Yesterday and today has been a learning curve for Brett and I. Until yesterday, we never really thought about how much and how blessed we were that Olivia was able to do so much. Since discharge she has been limited. She can't run, jump, ride on bumpy roads, sit for longs periods, lay down for too long, carry anything heavy, walk long distances or get bumped by a person or bag. We have also learned that at 7 it is extremely hard to manage her pain. She waits until the pain is excruciating before saying anything which means we are playing catch up. We have also learned that we have to be very specific about exactly what to expect. Today, she randomly asked us to promise no more lies. When we probed further, she said.... Yall lied to me about coming up here and just seeing the doctors. We tried to explain that we told her about what we knew about but that sometimes things change. I don't think she really bought it. We have found a local circus for today's activities.

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