Yesterday was a weekly clinic day and monthly Pentamidine infusion. Now the weeks are flying. It feels like she just had Pentamidine but it was due again. At the clinic, we had a lazy day and watched old reruns while the infusion ran. We skipped school although we brought it with us. We were both feeling exhausted and needed the break.

Naomi’s labs were good. ANC 3300; platelets 271; hemoglobin 12.2. Depending on the results of the Creatinine, she may start weaning off IV fluids again. I have left that all up to her. I do not even mention water to Naomi anymore. If she wants to get off the IV, she knows she needs to drink. I refuse to nag about that.

After her hematology appointment, we went to the bone surgeon and had her cast removed and arm recasted with a short cast. We do not need to go back for 3 weeks now and then the cast will probably be removed for good. They said she is healing very well.

Naomi is enjoying Irish dancing very much. She practices a lot. Her optimism has been better this past week than it had been in months. She feels like she has a life again.

We continue to settle into the new house and enjoy being closer to activities and friends. I like only needing to fill the van once per week, too!

Niamh had her first Communion on Sunday. I used it as an opportunity to get a photo of all the kids.


Day +169

Naomi is officially a 5th grader!

I handed out syllabi and checklists on Monday and the kids anxiously jumped into lessons. This year we have six homeschoolers: Micayah 11th, Malakye 9th, Lauryn 8th with some AP 9th, Naomi 5th, Niamh 2nd and Caitríona Kindergarten. That means Sinéad is the resident foodie. She loves doing puzzles and coloring and asking for more food. She does so by saying, “I am wanting dinner.” She eats “dinner” 5-6 times a day!

I have already graded science papers, taught for 2 days and am amazed at how smoothly things are going so far. The children are all happy with their schedules and activity plans. We are rather busy this year with Irish dance for 5 kids, Little Flowers for 4 girls, Little Women Charm School for 2 girls and choir/schola/altar serving for 4.

Naomi has really struggled with optimism. Since coming home, she has not been able to find her niche. Being a gymnast at heart, but too weak to do that, she is needing to find her way in this world apart from the one activity that was her escape and is her true love. I saw a ray of hope today. She is excited to begin Irish dance. Best of all, she is finding satisfaction in her school work and is excited each day to accomplish what she has to do. It is nice to see her moving through her school days with optimism and a good attitude. It was heartbreaking to see her struggle for so many months.

During her weekly hematology appointment today, the doctor said she will no longer be running all the viral tests each week. She will do them every other week and if Naomi has cold/virus symptoms. The doctor also cleared Naomi to begin Irish dance class tonight since it is mostly her feet doing the moving and it will actually help her build bone density.

Her labs today were fantastic. ANC 2500; platelets 328; hemoglobin 12.8. Her white blood cell count showed a higher than average number because her bone is healing. Tomorrow will be xrays to see how it is looking. Her vitamin D level was right on the line at 29. So we will supplement for a few months. The hot summers here are like winter for us because we do not get outside much.

Naomi and Caitriona both really enjoyed dance class tonight.



Naomi got a purple cast on yesterday. It goes above the elbow because she had some instability of the bone when she rotated her elbow. Next week, she will go back for another x-ray. As long as things heal well, she can get a short cast in 2 weeks. She is already planning which color that one will be. Now, we have a weekly appt for her broken bone with one doctor and another appt with her hematologist.

Naomi is obviously very resilient. We went from this at the hospital Monday night:

To this a few hours later while having the most amazing chocolate cake recipe (minus the eggs because I forgot to add them while juggling the news of her cartwheel-caused injury and phone calls/texts to her doctors).

Lauryn finished the cake while we were at ER.

So, Monday we were at ER. Tuesday at the pediatric orthopedic surgeon. Wednesday at hematologist. We are also in the middle of moving about 40 minutes from our old house, to the northwest corner, near the mountains and farm area of Vegas. We love it. The new area – NOT the move! We will be very happy when the move is over. But I digress.

Her blood work today was fantastic. ANC 5000; hemoglobin 12.3; platelets 277. Her dr was very happy with her energy, sense of humor and labs. The fact that her counts are so high is a good indication that her bone marrow is making cells to repair that broken bone. It was her highest ANC since transplant. When anyone asks, “what did you do to your arm?” Naomi replies, “something really stupid!” She is quite a sight with a mask and a cast.

With school starting locally, although we homeschool, activities are starting, too. So, I inquired about what precautions to take for Naomi’s well-being and how involved she can be in activities. The dr said that her immune system is doing well fighting things and we should just continue to sanitize, wear a mask and be cautious around those with illnesses. I will likely carry masks for my other kids. But seriously, we will have lots of hand sanitizer and be sharing liberally. Bath and Body, here I come!

We are looking into whether or not Dr. Margolis wants to keep her IgG thresh-hold higher. We currently infuse IVIG when she reaches 500 or below. To keep her from getting sick frequently, we could increase the thresh-hold to a higher level. Our dr was going to look into that. Since we have so many children involved in so many activities, Naomi is likely to have immune tests frequently, which is not necessarily a bad thing. But we need to see how long her recoveries take. The good news is that she is recovering and her immune system is working. That girl!

I was told that a box from CHW arrived at the Dr’s office with instructions for tests to be done and sent to CHW and Dr. Margolis at the end of the month. It is likely engraftment analysis and such. I think they will he scheduled for 8/30 when she gets Pentamidine next. We did extra tests today to check vit D and bone density minerals….. you know because if the broken arm.


Day +160

Happy Birthday, Naomi!  The day didn’t end up as we thought.  We had the most amazing chocolate cake recipe waiting for this day and were anxious to eat dinner and then play games and have fun together all night.  As I was baking her birthday cake, Naomi admitted she had done a cartwheel and thought she heard her wrist crack.  She kept that detail from me all day because she has been forbidden to do cartwheels for months on account of the broviac port in her chest.  She said that she thought a one-handed cartwheel would be fine because she was avoiding the right arm where her broviac insertion is located.  So here we are spending her birthday at the ER.  She has a buckle fracture and is in a cast for 6-8 weeks.  Tomorrow I will have to call and schedule a follow up with an orthopedic specialist.  She definitely keeps life interesting….. and busy.



Day +148

It has been a while! Life is becoming more normal and that is very good. The boys dance for summer session is over and they have another two weeks off. Sinéad is a busy busy girl who takes the energy of us all. I am so glad that I have teenagers to help chase that lightning bolt! Malakye and Lauryn have about 20 lessons of math from last year to complete. So we are almost done there. Lauryn had a week of nightly play rehearsal. The Missoula Children's Theater was in town and she auditioned with 140 kids ages 6-17 and got a place as a card in the Alice in Wonderful rendition. It included rehearsal Monday thru Friday 2-4 hours per night and then the performances Saturday. It was a very busy week! She enjoyed it and has gotten bitten by the acting bug and is considering more auditions. She made a very cute card. She sent me the featured selfie during dress rehearsal.

Our house is in boxes and our stuff shuffled between old house and new house. We are moving north towards the mountains. The new rental has a lot of space for a family of 10 (Aslan counts, too!) and for me to have a home office for midwifery and doula clients to come have visits. It is quite a shuffle for the kids and I to take things up there as it is about 35 minutes from our current location. Out of the tourist and traffic areas of the city. At the new house, we can walk out our doors or look out our windows and the mountains are close! There is a grassy park 2 doors down from is and 3 grassy areas/parks with playsets in the community. We are literally on the edge of the desert and town, which is a great thing in the city. At least I think so! The transition will likely include Naomi moving back into a bedroom with another child. The 5th bedroom will be my office now so she doesn't get her own room anymore. But she will get her bunk bed back and I think she is excited about that.

Naomi is doing very very well. She recovered from the cold just fine. Last week, the nurse practitioner ordered a test to check her IgG levels and scheduled IVIG for a few days later pending the results of the IgG test. But those IgG levels were high enough that we were able to cancel the scheduled IVIG infusion!

I switched her from a liquid magnesium to a capsule by Pure Encapsulations. I saw an immediate improvement in her magnesium labs and I think I found a new magnesium supplement for us all!

We have had a few issues with Naomi's IV pump. It was running empty and beeping with air in the line prior to the timer being done. The home infusion company brought me a new pump yesterday. It has happened twice in the past month. I get really weirded out by the idea of air in the line!

She had her monthly pentamidine dose this past Monday. Her labs continue to be good. Her ANC was almost 4000 this week! During the cold, her hemoglobin and hematocrit dropped almost alarmingly (to me, Drs said she was "stable" and to not worry – I did anyway). But she is back up over 12 with her Hemoglobin again and her hematocrit is in normal range for the first time since October 2016! Wow, 10 months. Where does time go?!?