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Day +252

While we happily prepare for a normal day of school, gymnastics and football, we are looking back, too. A year ago on this day, September 24, 2013, Naomi had her first of what be a total of 3 bone marrow biopsies.

During these months as I “relive” her illness with the calendar, I am working on writing notes about the experience to compile her book. I am finding it difficult to decide what to put here and what to put on the book template. I end up writing a lot here and then emailing it to my book notes rather than weigh you down with all of it. The last thing I want is to turn her current blog into a Debbie-downer experience. Compiling information for her book has been more difficult than I anticipated. Part of me doesn’t want to go there. Another part of me knows that getting it all down in writing will allow me to actually move beyond it better.

I received a call today that Aetna Specialty pharmacy is delivering a 90-day supply of Gengraf cyclosporine tomorrow. This could very well be her last delivery of that prescription. That is exciting! When we return to City of Hope the first week of November, I am expecting a weaning schedule.

As I write this outside and watch the children run around before we begin school, I am enjoying the cool morning (hey, it is under 95 in Vegas and that is saying something!) and am especially grateful that all my children are happy, healthy and home.

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Day +250 and 1 Year Since Hospital Admission

Our 2 boys and 4 girls with friends at Farmer Boys today. That means it was Micayah & Malakye with 11 girls! Poor guys are way outnumbered but so Blessed to have such sweet young ladies as friends. David-Rita Halas and Graciela Vazquez Guthrie it was so nice to spend the afternoon with your families. You have all been tremendous Blessings to us and we were happy to celebrate Day +250 with you. This Monday is the 1 year anniversary of Naomi having been admitted to the hospital which resulted in her AA diagnosis later in the week. A week of many emotions but especially gratefulness for how far she has come in a year.

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In other updates, Naomi attended her first XCEL gymnastics class this past Wednesday. When she came home, she was wiped out and said, “I did not know XCEL would include conditioning! I am beat!” And it did wipe her out. I do not think she has done gymnastics since that class. I am happy to see her feeling fulfilled at practice. The weekend was busy with Micayah’s football game Saturday and church and getting together with friends on Sunday. Naomi continues to do well but is struggling with some low grade fevers, still, on the days right after Bactrim. Alkalizing liquids seem to help a lot though -apple cider vinegar water, lemon water and green smoothies. We will be starting a countdown to Day +365 soon. I think we will do a wall chain or something at home and remove a link each day to countdown to her Re-birthday (and the EDD of her little sister!).

We have 12 more weeks of last year’s school to complete. We will then move right into next year’s curriculum so that Micayah will begin 9th grade, HIGH SCHOOL!, in August/September on-time. We will continue to homeschool through high school and continue to use the curriculum we are currently using (Mother of Divine Grace) but he will be enrolled in that school officially. So, I will teach him but the advisors there help keep us on track and be sure we have everything in line for college as far as credits and classes required. So, in December, we will have Micayah is 8th, Malakye in 6th, Lauryn in 5th, Naomi in 2nd and Niamh officially in K/1!

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Movin’ On Up!

Nothing stops Naomi. She was promoted to the the pre-team xcel class at gymnastics tonight. She is basically back where she was a year ago at this time! Such an amazing little girl.

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Day +243 Fairy Blessings

I attempted to pay a bill at St. Rose last Friday.  I was on hold forever and never did get through to make a payment because the automated system was not cooperating for me….

I tried again this afternoon.  I was getting REALLY angry because I was told by the automated system that our account number did not exist and I needed to talk with someone to make a payment.  After 2.5 hours of being passed from office to office, it was confirmed by a manager that ALL of Naomi’s accounts are paid in full with a $0 balance and CLOSED.  The automated system would not let me pay a bill under her account number because there are no bills to pay!

According to my records, which are always precise and accurate because I record everything, her balance at St. Rose was $1250.  Today it is $0.

I went from crying tears of frustration over bills to weeping at the miracle of it.  It may be a computer glitch, Divine intervention, or a loving soul who is watching out for us.  We feel incredibly blessed.  If whoever paid this on our behalf reads here, may your kindness be heaped back on your shoulders 1000-fold!

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Micayah

Micayah is playing on a flag football league this year. This is probably the only time in our lives that we will cheer for the Raiders since that is the team to which he was assigned. :).

Last week, his first game was a loss against the Seahawks with a score of 48-28. Although a loss for the team, Micayah personally got a sack and a tackle. In flag football, a tackle is a flag pull on a member of the opposing team. As a rusher, Micayah’s first order of play is to sack the opposing team’s quarterback.

Today, he played the Steelers and was all over the field getting a sack, tackle, blocked pass and ended the game with the final interception to seal up the shut out of the Steelers with a score of 0-39. He was high-fived and hugged by his teammates and his coach picked him up and celebrated with him while telling Micayah his is the hardest working member of the team.

Most mornings, Micayah is awake around 7:30-8am, does some school work while it is quiet and then goes out to do his morning workout for football. His workout involves a run and exercises. He is extremely dedicated.

On our way off the field today, a woman stopped me. Her son was on the opposing team and she told me that she was watching for Micayah to leave the field because she wanted to tell him how much she respected his attitude on the field and that she could tell he is a good person on and off the field. She nearly had tears in her eyes while telling him what a good person he is and that she appreciated how well he acts.

This league is highly focused on ethical behavior. Parents wear shirts to match the team and if the parents misbehave, the team will be penalized. Most of the kids are good kids without bad language or attitudes. They really support one another. It is refreshing to be part of an organization like Henderson Flag Football. We were introduced to it by our neighbors whose sons play. Malakye looks forward to playing next season, too.

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Day +236

Naomi is so excited to go back to gymnastics today. She has a certain amount of water that she must drink before we can leave for class. Here is to a happy and productive Monday….

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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!