+Day 262

Last week, I was in Arizona with these Irish dancers who competed at the Western Regional Oireachtas.

Niamh placed 10th in the Traditional Set. She did a fantastic job for her first Oireachtas.

Micayah and Malakye both did amazing and showed huge improvement from last year, which was their first year in championship level dancing. So, this weekend, at their second year, they both qualified for Nationals (again) and Micayah qualified for Worlds.

Prior to leaving for Arizona, the boys and Niamh had intensive practices and pushed through them even while sick. For the past week, Naomi has been fighting the same cold/virus that the rest of our family had to deal with over the past 3 weeks. She had some very sleepy days, low grade fever of 99.8 and seems to generally be feeling ok; she is a bit more emotional, moody, and irritable, but that is to be expected while sick. These illnesses hit her harder and will take longer for her to recover as well. Most of us felt down and out for over a week. So I anticipate it may be longer for her.

Her IgG level went from 516 to 511 this week so she did not get IVIG. But her platelets dropped from 301 last week to 204 this week. Her hemoglobin dropped from 12.6 to 10.7. She looks pale and spends a lot of her time in PJs and under blankets. We pray for this illness to pass through her system without depleting her counts or suppressing her bone marrow any more than it already has.

Her doctor was out of the office and we saw the NP this week. After coming home, I decided that I would feel better going back next week for follow up labs. So I will schedule an appointment for Tuesday or Wednesday to get labs and see her Dr just keep an eye on her counts.

We are half way through a 4-day weekend to celebrate family time. I hope you all had a wonderful and blessed Thanksgiving. From our family to yours, Happy Thanksgiving!


+Day 249

Naomi’s appointment this past week was long but uneventful. The registering nurse never flipped the sign outside our door. So after an hour, I went to the nurses station to learn that they didn’t even know we were in there waiting.

I got some sewing done on Irish dance costumes and Naomi did some schoolwork. So it wasn’t a huge waste of time. But when she began turning medical gloves into water balloons I knew it was time to get things moving!

Her labs continue to be good and mostly in normal range. Her WBCs are at the lowest end of normal while a component of WBCs, monocytes, are as high as normal can get. This is likely on account of a cold that the kids in the family are passing around. (More on that later.) Her IgG continues to hover just above 500, at 515 last appt and 516 this appt, meaning she has avoided IVIG. Her ANC is usually between 2300 and 3500. Her platelets are over 300,000 and her hemoglobin is well over 12.

Her kidneys, creatinine, and BUN continue to be monitored closely as we wean her off IV hydration. She now gets fluids 3 nights per week and should be drinking 4/5 canteens a day. This is a challenge for her. She is doing fairly well with it though. She created a drinking chart to color in a box for each canteen. Her goal is 70 canteens between appts and so she made 70 squares to be colored before we go back to the dr again. I am so proud of her!

About 10 days ago, the little girls started passing a cold around. I, as mom, have had it for 6 days now. Lauryn, also a caretaker for the littles around here, has had it for 5 days. But Naomi avoided it until yesterday, day 248, when she had a sore throat. Now, on day 249, she has a small cough and is sneezing but the sore throat is gone. It always amazes me how she actually kicks these things faster than me.

Our days have been filled with warm tea (it got cool fast!), Irish dance practices and preparation for regional championships where Niamh, Micayah and Malakye are competing, and a lot of family time. As we think back to last year at this time, her counts were dropping and we were planning for our family vacation over Thanksgiving. This year will look very different for us over the holiday, but we are certainly thankful to all be together.


+Day 244

The home medical service called today to schedule tomorrow’s delivery. They told me that her Dr. lowered IV hydration to 3 bags per week. That is a great way to start the week!

Here are some photos from our past month.