Naomi had her usual Monday appt scheduled in the afternoon. I knew this was not really how things  should be because she takes meds at 10am and should have some tests done right before she takes those meds. The front desk, however, insisted no appt was available Monday morning. On Monday afternoon, the nurse practicioner said she thought that I needed an afternoon appt. I assured her that the front desk insisted we come in the afternoon. They wanted us back Tuesday morning to test her therapeutic medication level since it was sipposed to be done before taking meds. We agreed to come back Tuesday. 

While there on Monday and due to Naomi fighting this cold, she had some extra lab tests including influenza A and B, adenovirus, CMV, EBV and HHV. We also checked Naomi’s IgG level to see the strength of her immune system. The goal is to keep this level above 500. She has needed it twice since transplant and with her fighting something we thought she might need it again. The last time her level had been checked she was around 750 and that was 2-3 weeks earlier. We drew that lab test Monday and had tentative plans to give Naomi IVIG Tuesday or Wednesday, possibly while there Tuesday for the therapeutic Tacrolimus draw. 
Tuesday was full of good news!  Creatinine at 0.50 so her kidneys are happy; IgG at 693 and no IVIG needed; Her CBC was good too with ANC over 2500; reticulocyte count back up near 50,000 after looking suppressed by illness the past week or two; Influenzas A and B were both negative, too. As the week progressed, we learned that all the viral tests run were also negative and by Friday, Naomi was completely over the cold she had earlier in the week. 

She ventured to Office Max with us today. She was so happy when I told her she could come along with me and Lauryn. She even went without a hat and put on ear rings. She is starting to feel more confident in her skin…. or I mean hair. Maybe I can get a good picture soon? 

Here is my attempt at selfies when we went for frozen yogurt this week. I love the face mask on her wrist. 



Over the past week the children have, two at a time, woken up with a sore throat, fatigue, and then the next day a runny nose and annoying but light cough. Naomi started it on Thursday. I notified her nurse via text of her symptoms and was told to monitor her for fever and report if temps went over 100.5 or she felt bad. Her temp went up to 99.9 once but then she napped and her temp went right down. By Friday evening she had a runny nose and was through it. I was so happy to see a runny nose. That means she has white blood cells. Her tranplanted immune system worked! 

She continues to have weekly labs. Creatinine continues to be highish, in the 0.6 range which is the high end of normal. She still resists drinking even though I gave her my favorite canteen because she claimed it made it easier for her to drink……

We continue to melt in Las Vegas and mostly hibernate. Half way through July means half way to September and the shift towards cooler temps here. (I used to look forward to July and it was my favorite month until we moved here.) We are using the hot days to organize next year’s school schedules, print them and organize books according to who will use them. We ran out of library space again. I think we need to turn a whole room into a library. 

Naomi attended a birthday party earlier this week. It was her first in-a-house social event. She hugged me repeatedly when I said she could go.  Her Daddy picked her up after work and hung out a bit and he said she ran to him when he got there and cuddled on his lap and kept hugging him, too. We are looking for every opportunity for normalcy. I went to a workshop last week and then was a doula at a birth this past weekend. It was good for me to work some. I missed it. 

I am still having a hard time getting a good photo of Naomi but she is so darn cute with her hair growing back. I have not said it out loud yet, but at the length her hair is at right now, when looking at her front the front, she REALLY looks like Micayah!


+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!