The other days, Aimee and I sit in a doctors' office. We spend many moments there together waiting, holding hands, seeing the same specialists over and over.
Aimee is doing really well right now, yet she is treated as a time bomb. The kind doctors are so happy to hear she is doing well. They are pleasantly surprised at how clear her chest sounds are. They are waiting for changes. It is rarely an "if", but rather a "when". "When the plateau ends" "when she has more pneumonias" "when it worsens" "if you want to continue considering quality of life".
I really am thankful for good doctors, doctors who make us face real facts, but also I want to slap them a tiny bit. Reality says that life ends, that bodies decay, that Aimee is on a path that will continue down. The voice of these doctors are the sound of that ticking time bomb in my ear. How grateful I am that most days that sound is blocked out by life!
In positive doctor notes, Aimee had a great sick season, probably due to her spending nearly 6 months isolated. We have diligently kept up with her central apnea situation, which her pulmonologist says is probably keeping her from hypertension. We just did an echocardiogram Tuesday to make sure. We have some days that require more interventions with cathetars, more enimas, more nightime alarms, more medications. Overall though, we are pleased with this plateau and will enjoy the even ground ahead for every step that exists.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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