Naomi had clinic last Friday. It included her monthly pentamidine dose which is given through IV over 2 hours. In Wisconsin, it was administered through a nebulizer. Her labs were fantastic with 259,000 platelets, 12.6 hemoglobin and ANC 1900. 

Monday’s appt was labs only. Her reports were all good again with just mild fluctuations of ANC 1600, platelets 239,000 and hemoglobin 12.3. It is interesting to me that morning labs are ALWAYS lower for her. 

I am getting better at dressing changes at home and we also disscovered a way to cover her line with Glad press n seal so that she can actually shower and not just bathe. She loves to shower and her mood shifted immediately after her first shower. She seems so much more optimistic. Anything we can do to help her feel “normal.”  Over the next few days we will be doing only 8 hours of fluids to see how well she can do with taking in fluids. If her creatinine levels are good on Thursday, then we will likely reduce the prescription. 

We have been very busy trying to wrap up our 2016-2017 school year. Grading, teaching, scrambling to finalize things for each child. I have a meeting Thursday afternoon (telecon) with our advisor to plan 2017-2018. Aaron and I have will have SIX homeschoolers! Caitríona-K; Niamh – 2; Naomi – 5; Lauryn – 8; Malakye – 9; Micayah – 11. Unbelievable. 

We continue to have a lot of family time. Games, puzzles, movies, jokes, anything to keep us cool while it is over 100 outside every day. Desserts daily. All our favorite foods. Naomi and I are still thrilled to be home. Home seems like somewhere I never want to leave. I found a renewed fondness for housekeeping by not being home for 3 months. We certainly don’t take things for granted. Each day is precious.