+119 Happy 4th of July!

Where have the days gone? I guess we have been busy starting our summer. We have not been doing much but catching up on home life with minimal school over the summer. The boys have been dancing a lot lately too. Math and decluttering is our focus since everything else is complete. Caitríona completed her preschool curriculum. So I moved her right ahead to the Kindergarten program. 

Naomi has continued to have 2 appointments per week with no major issues. She had her monthly Pentamidine dose on Monday 7/3. The week before, her creatinine level was higher than it has ever been. That is NOT a good thing. When the creatinine level is higher than normal it means her kidneys are not happy. Being HOT here and being 105-110 most days, plus taking Tacrolimus, means she must drink a lot of water. She is not really compliant with this….. The result is that we had to increase her IV back to 10 hours per day. She still gets it overnight. The 10 hours will actually help me sleep better! More importantly, it will help her kidneys through this hot and dry season. 

Her blood counts continue to fluctuate but are acceptable. Her ANC bounces between 1300-2300. Her hemoglobin has been in the 12 range but dropped to the 11 range this week. Her platelets hold steady in the 230-250 range. All in all, she is doing well. 

From this point forward she will be able to go see the doctor just once a week and we do not need to come for a second appointment.  She is only on two meds twice a day, plus magnesium  powder mixed with water also twice a day. 
We enjoyed our first day with friends on an escape to the mountain homeschool trip. Wejoined  about 25 friends for a Friday at Mt. Charleston. We were able to join since it was an outside event and on the mountain where it was cool. We watched the thermometer on the van drop from 97 when we turned off the highway to 79 when we reached the meadow where we joined friends. 

Micayah, Malakye and Aaron leave in a few days for National Championships in New Orleans. The boys have both been practicing quite a bit in preparation for this event. While they practiced Monday I took the girls hiking at Calico Basin where it was a cool 104 as compared to 109-111 in town. 

Tonight we are enjoying hamburgers and fireworks. Tomorrow is 120 days since transplant. 1/3 of the way to a year! Happy 4th of July! 

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