Three Little Birds

Story of 3 little birds and one who soared above us all.

end of June

Clay is returning tonight from yet another week in Boston. We are hoping to have a semi-normal July 4th weekend with the 2/3rds at Lake of the Ozarks this weekend. (If you’re in the area, Soca is playing at Captain Ron’s) I will then head back to Boston next Tuesday. Lydia had a few rougher days during the week with taking longer to get her O2 saturations back up and the decision was made to just stop the stretching and begin lifting the paralytics off her. With one slight fever and increasing respiratory problems, they also added quite a slew of antibiotics to her already complex medicine list. She had an esophogram last week and with a gap of approx 40mm, a connection just didn’t seem possible and she needed a break. I’ll be talking to Dr. Foker and Dr. Jennings next week to determine the next plan for her but our goals are now to just get her home and give her some normalcy in her life, even if that includes more accessories and medical paraphernalia than we ever dreamed. I’ve upgraded my analysis of our year in Boston from our own private Vietnam to more of a Korean War analogy – a lot of stress and drama and the line remains set at the 38th parallel. We likely will be coming back to KC after ~16 months of being in Boston still unconnected, unable to eat and with more problems than when we got there, but having gained a couple cm on each end of the esophagus and a new learning curve for her surgeons. As sad as we are about the complications that occurred with her last round of surgeries and the failure yet again to have a whole esophagus, we are trying to change our focus to her recovery and getting her home to be with her family.

Here’s a picture from today of “‘Ol Ladybug Johnston” awake and once again resuming her fashionable ways.

Long overdue snuggle time with Daddy.

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