+68 – Monday

Nights before labs are becoming just another night of sleeplessness.  Last night, I was unable to fall asleep until around 3am.  Meanwhile, Naomi kept flopping around our bed and woke throughout the night a few times to take drinks.  At one point, she woke and  sat up fast and said, “I am not tired! Did I really just fall asleep?”  I replied that she fell asleep hours ago and she should be exhausted because it was 2am…

In the morning, when the alarm went off, I got up and started to get ready.  It was Naomi who poked around though, complained she was tired and did not want to go to the appt, and made us late.  We each handle the appts in an opposite way.  She falls asleep just fine but does not want to wake or get ready to leave.  I cannot fall asleep and then want to run out the door as as soon as the alarm goes off to get the labs over!  We are quite the pair.

Our appt today was mostly positive.  Naomi’s levels are all holding steady with just a slight ANC increase from 1300 to 1400.  Her kidneys and liver continue to be happy.  The herbal teas continue to do what we need them to do keeping her toxicity levels low while still keeping her hydrated.  I am cautious to not overuse the herbal drinks considering that some of them can be diuretic and that is the opposite effect we need right now.  But the low amounts I gave her this past weekend did exactly what we hoped.  

Today was also the first appt that her potassium and phosphorus levels were not too high.  We are finally able to stop the med that lowers her phosphorus and because her kidneys have been happy for a full week now, we are going to restart her acyclovir.  

We head back to the lab on Thursday.  If all is well, we can then go to once per week…. Aaron and the other children are all home.  It is so hard when we are in different states but everyone being here for too long gets crazy, too.  Hopefully we will be home soon.  

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