BMT +49 (Tuesday, day 65)

Today was our last day that we need to be at clinic at 8:30 AM. I talked to our team about the time difference at home and that it was difficult to FaceTime with everyone at home and do 9 AM and 9 PM meds. We would rather do 10 AM and 10 PM meds so that we can get an extra hour of sleep in the morning. They were absolutely fine with that and so now we do not need to be at clinic until 10 AM on future dates and we have moved Naomi’s meds back an hour to allow us an extra hour of sleep.

Last week, she was permitted to be off of the IV fluids for eight hours per day. Her metabolic panel today was beautiful proving that she is drinking adequately so they are now going to allow her to be off of the IV fluids for 12 hours per day! Progress. 

Her reticulocyte count is up into the 200s which is absolutely amazing and along with that her red blood cells are climbing and her hemoglobin is almost at nine on its own. It was 8.9 today. Platelets are up to 72. She continues to not need transfusions for the 3rd week! The white blood cell count and ANC are still sluggish though. It is likely that she is having some viral exposure which is likely suppressing her ANC. We don’t go back to clinic until Friday now. 

We are going to try to get outside a lot over these next few days as weather permits. Today is beautiful, sunny, clear blue skies and we are at the park as I write this entry. We have also considered making Wednesday “Adventure Day” when we leave the RMH and go on a day trip. I have to get myself psyched up for that because it will involve packing lunches and planning. 

I have kept myself busy the past few days working with the kids at home to figure out a game plan for completing the semester, grading tests over FaceTime and meeting by phone with our advisor to start planning next year. We have so much exciting stuff on the horizon. I am so proud of the kids at home for working as well as they have on their own. They have really impressed me. 

I call this Burnout from the 80s. I think she is ready to play a part in Footloose.  She sure keeps us laughing and running! 

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