BMT +30 (Thursday, day 46)

I woke and gathered dirty laundry, prepared to clean (dust, vacuum, disinfect everything) and got myself dressed and ready for the day. I felt like it would not follow course though. Naomi barely ate her dinner last night and was extremely moody.

I walked into the bedroom to grab clothing for Sinéad to see Naomi laying in bed. She felt really miserable. Everything ached and she was tired. I took her temperatire and it was 99.6. I did not delay calling the Day Hospital/Clinic.

They told us to come in and we could check labs and go from there. Within an hour, we had eaten and gotten over there. Naomi sat in the stroller and I pushed her because she felt too tired to walk.

Her labs were decent. ANC of 870. Her hemoglobin was 7.6. Normally we transfuse at 7.0 or below but with her feeling so bad, she received a transfusion today. Her reticulocyte count continues to grow. Her ANC continues to improve without G-CSF. Her platelets held fairly well. They were 18 on Tuesday and 14 today. So we are definitely seeing progress.

She received a dose of Tylenol as soon as we got there. Her temperature was already within normal range when we got there too – 98.7. Within too long she was acting more normal  likely because of the pain relief the Tylenol gave her. They also swabbed her nose to detect for viruses to put a name to what we are dealing with here. The course of action will vary based on those results.

Sinéad and Caitríona were so well behaved today. They watched some Curious George while Naomi napped. She slept for about an hour while being transfused.

Naomi sat in the stroller on the way back to RMH too. I was reminded of all the days she was too weak to walk after her first transplant and realized that today was the first day she required assistance. This virus has knocked her down hard. Upon returning back to RMH, she napped for over 3 hours again. Caitríona finished this puzzle while I fell asleep with Sinéad and Naomi was also asleep. I slept for about 30 minutes, tried to sneak away and Sinéad woke and then I had to get her back to sleep before finally escaping.

After waking, Naomi said she felt like the nap did nothing for her as she was still so tired. I made her lemonade and homemade ginger lemon iced tea. We are attempting to get more fluids in her.  She ate about half her dinner which is the best she has eaten in the past 2 days.  During dinner, we finished this puzzle together.

Tonight, she took a bath with lots of pampering Posh including her Bubbles on Bubbles on Bubbles and All I Avo Wanted face mask. Then I gave her a massage with lemon essential oil lotion. She was feeling less achey after all that.

I am also feeling pretty sore, likely from pushing her uphill in that stroller while chasing Sinéad…. well, actually turning around to see where Sinéad was, stopping and going back for her, carrying her, sitting her on top of the stroller and pushing them both…. uphill. I also had to do 3 loads of laundry this evening and all the cleaning that I planned on doing throughout the day.

I am starting to physically and mentally feel the effects of being a “single mom” as I am craving some time alone. One of the hardest things about being a parent to many children is when one thinks another has it better. That competition is too much. I cannot keep up with equalizing and one upping or wishing that one had what another is getting. There just is not enough time in a day and energy for one person to do everything for everyone. So I have to choose what matters most and will have the greatest benefit. On that note, Caitríona read her first sentence today. We have now conpleted 13 lessons of Teach Your Child to Read in 100 Easy Lessons. My goal is for her be through as much of it as possible when we leave here.  We try to do more than 1 lesson a day but have not gotten to it each day.  The countdown to seeing the rest of the family is on.  I can’t wait to hug my husband, kids and puppy dog.

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