Harper

She is doing much better this week. Her energy has really picked up being “home” and having access to food she actually wants to eat. Her liver was REALLY stressed last week and they were considering a biopsy however, her liver labs looked MUCH better the end of this week and biopsy is off the table. Her CMV labs have dropped significantly, which is excellent. 2 consecutive negative CMV labs means she can come off of one of her IV meds. Praying we get the first negative this coming week and another the following week. (They only draw this lab once a week). She is off of the tube feeds during the day and only getting them at night now. This is great since it allows her to be more active, not being hooked up all day . Hopefully they will let her drop night feeds soon too, meeting with nutritionist at next appt to discuss. Her platelet counts seem to have finally recovered and we have high hopes she won’t need more transfusions, at least in the immediate future. Thank goodness, her reactions to platelet infusions seemed to get worse each infusion. Her nausea is back under control now too, so she has been a pretty happy camper. Just adjusting to being home again with rules. You know, all the things that come with living a “normal” kid life again.