198 days to one year. I have to say that we are incredibly Blessed for Naomi to be doing as well as she is. Each week, multiple times a week, I find myself reading about another AA sufferer, often further along after transplant and not faring as well. I have to often “X” out a facebook screen, say a prayer for the person I just read about, and be thankful that she is where she is. When asked how Naomi is recovering, I repeatedly answer that everything that could have gone right for her has. As difficult as some of our days are (because cyclosporine does indeed make her psycho more often than I admit publicly), I still feel incredibly blessed to be planning activities for my children over the coming months and not wondering who will keep them safe in my absence.
Our days are looking normal again. We are gearing up for August when children will have activities out of the house multiple nights a week. September will be a new start for us, completing one year since her diagnosis. I anticipate some difficult moments, but one day at a time will see us through.
Today was our first marathon Monday in about 9 months. Naomi had an appt for labs and check-up and a few children had activities.
At her appt, her labs were good. Waiting for 2 hours to see the dr was not. I miss COH which was almost always right on time. We have to wait a few days for her cyclosporine level to come back, as well as her liver and kidney test results. At her appt, it was also noted that she has gained almost a lb over the past month and increased a cm in height.
I started my morning calling COH and getting her a new prescription with the increased dosage amount accounted for. Last month, we had 300 capsules delivered but she needs 390 per month. It was surprisingly easy this time. Having gone through this a few times, I am less stressed calling for refills and prescription changes.
This evening, Naomi had her first of two gymnastics classes scheduled for this week. This is the first week we will have two classes. With as much flipping around as she does at home, I cannot imagine her being any more stressed or overworked by being at the gym on the mats. Today was the first time I went upstairs to the observing window to watch. It was there, in the same place I watched nearly every week, that I first saw her sick. I have a certain area of the observing deck that I like to sit. It was there that I looked down at her from the window last September and saw how tired and weak she looked. I saw her sit between exercises when the teacher was watching other students. I remember her looking up at me and likely wondering in her own mind what was wrong that she could not even stand through the whole class. Having just been promoted to a new level, I wondered if she was being pushed too hard, or if she really was not ready to be promoted again. Within two weeks, she would be hospitalized in critical condition and diagnosed with AA.
I could not even walk back up the observing deck when I would go get Lauryn from ballet. I tried once and I cried the whole time I was up there, stumbling through talking to the ballet teacher and running out of there feeling like a fool. After that time, it made me sick to my stomach to even see the steps. I did not even think about it, or plan it today. But I found myself telling Naomi when she went in to class, that I would be upstairs watching. After I said it, I did a double take and wondered what I had just said that for because I knew she would be looking for me up there. So, I made myself go up there. I cherish when she was on the beam and looked for me, saw me and waved with a huge smile.
It was a fantastic class for her filled with time on the bar and beam. The instructor she had was new to us, did not know Naomi before today, and told me how incredible she did during class. I swelled inside, half wanting to cry and to tell her all about where Naomi has been the past year, but I did not. I do love when we see Naomi’s first teacher here in Vegas. She looks at her and shakes her and says, “She is a walking miracle.” My thoughts exactly.