Day +232 (Thursday)

Naomi and I made the trip to City of Hope alone on Thursday. It was an early appt for labs and a meeting with the dr. We left by 5:30am and arrived in Duarte at 9:20am, filled the gas tank, got a smoothie for each of us and then checked in at the lab. We checked in at 9:47am and were into the lab by 10:15am. After labs, we went upstairs to the clinic to meet with the dr for our 11am appt, and Naomi took her meds while we waited. She has to wait to do meds until after lab draws.

It was not long before we were called in for vitals. The nurse told me there was a new screening questionnaire and a few questions for me. The first question she asked is if Naomi has fallen in the last year. I said that she fell off her bike a few times and does gymnastics and falls there sometimes. The nurse gave Naomi a bright yellow sticker on her ID card and a bracelet that said “FALL RISK.” Naomi rolled her eyes and argued with me about how she does not fall at gymnastics. It was in good humor but she was annoyed greatly by the bracelet. All her vitals were good so the nurse escorted us to the exam room.

As soon as the nurse left the exam room, Naomi tore that bright yellow bracelet off her wrist and said, “Stick this in your bag. I am NO fall risk.” It was quite humorous!

Isabelle, Naomi’s doll that she got for her birthday, was on the exam table waiting for the Dr. when she came into the room for our visit. Naomi was sitting in the chair beside me. So, Dr. P asked Isabelle if she was ready for her exam and used her stethoscope to listen to Isabelle’s heartbeat. She turned and looked at Naomi over her shoulder and said, “Your doll does not have a good heartbeat, Mam.” Naomi was cracking up at how serious the dr was acting. Naomi climbed up on the table for her exam and got a glowing review. It is always funny to watch Naomi’s strength tests with the Dr. There is no doubt about it that Naomi is a tough girl with plenty of muscle strength!

We discussed a lot of different things beginning with the fluctuating temps, and me taking Naomi out of gymnastics because of the fevers. Dr. P told me to move Bactrim to another day and put Naomi back in gymnastics. She told Naomi that she MUST drink A LOT on gymnastics days. I am to let her know if fevers after Bactrim continue if we move it to a different day and we might switch her off that Bactrim.

Her blood counts were great. ANC was 3400. Hemoglobin 11.3. I think that is the highest that we ever know of! Her platelets are 171,000. Being a student midwife, I looked at her labs and thought to myself, “hey my daughter would no longer risk-out of a natural birth at home if she was my client!” 😉

We were told that we do not need to go back for two MONTHS for a meeting with Dr. P but should see our dr in Vegas after a month. 4 weeks between lab draws is VERY exciting! 2 months before needing to drive to CA is very exciting, too. There was no increase in cyclosporine dose although her level was below 150 again. We are excited for the next appt because we will probably start to taper cyclosporine. Dr. P told us that she will be on cyclosporine for up to a year. Oh, and we discussed travel for Naomi’s wish trip and the Dr said that spring when she is off cyclosporine sounds like a great plan.

Naomi and I were on the road headed home by noon! She slept most of the way and I enjoyed a peaceful drive. We arrived home a little after 4pm and I was even able to go out to dinner back in Vegas with a midwife friend who there from Albuquerque.

Life is welcomely normal these days. Now back to school to finish up weekly lessons today!

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