Three years after she came home, QiuLu was stable, for her. We never missed medication doses. I had our routine down and never varied from it. She only got sick about once a week and she would gain about 1 pound in six months. For us, this was good.
One day in September 2013, I was notified that I was late getting her blood work done for the growth hormone. So we quickly got it. 1 1/2 hours from the time it was drawn, the doctor's office called. They asked how she was feeling. I told them things were good, for us. They explained her potassium was quite low. They said it could be fluke. She should eat high potassium foods for a few days and retake the test.
She had the blood test taken on Friday. I went to lunch with co-worker and said it had been five hours since the test was taken and no one called so that must be good news. No sooner had I said it, and the Doctor walked up behind me and said we needed to talk. She was at the same restaurant. She explained her potassium level was lower so she would need a supplement over the weekend and to repeat the test on Monday. She also explained she had been in conference with pediatric kidney specialists all morning. I was scared and asked if I should be worried. She said "Let's get through Monday."
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