+Day 249

Naomi’s appointment this past week was long but uneventful. The registering nurse never flipped the sign outside our door. So after an hour, I went to the nurses station to learn that they didn’t even know we were in there waiting.

I got some sewing done on Irish dance costumes and Naomi did some schoolwork. So it wasn’t a huge waste of time. But when she began turning medical gloves into water balloons I knew it was time to get things moving!

Her labs continue to be good and mostly in normal range. Her WBCs are at the lowest end of normal while a component of WBCs, monocytes, are as high as normal can get. This is likely on account of a cold that the kids in the family are passing around. (More on that later.) Her IgG continues to hover just above 500, at 515 last appt and 516 this appt, meaning she has avoided IVIG. Her ANC is usually between 2300 and 3500. Her platelets are over 300,000 and her hemoglobin is well over 12.

Her kidneys, creatinine, and BUN continue to be monitored closely as we wean her off IV hydration. She now gets fluids 3 nights per week and should be drinking 4/5 canteens a day. This is a challenge for her. She is doing fairly well with it though. She created a drinking chart to color in a box for each canteen. Her goal is 70 canteens between appts and so she made 70 squares to be colored before we go back to the dr again. I am so proud of her!

About 10 days ago, the little girls started passing a cold around. I, as mom, have had it for 6 days now. Lauryn, also a caretaker for the littles around here, has had it for 5 days. But Naomi avoided it until yesterday, day 248, when she had a sore throat. Now, on day 249, she has a small cough and is sneezing but the sore throat is gone. It always amazes me how she actually kicks these things faster than me.

Our days have been filled with warm tea (it got cool fast!), Irish dance practices and preparation for regional championships where Niamh, Micayah and Malakye are competing, and a lot of family time. As we think back to last year at this time, her counts were dropping and we were planning for our family vacation over Thanksgiving. This year will look very different for us over the holiday, but we are certainly thankful to all be together.

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