Day +19 was a very exciting day. During the dr’s rounds, we were told “all good news and nothing bad. Now that her counts are all rising, we just watch for a rash. It is unlikely she will get one since her brother was her donor, but we will watch anyway.” Also, during rounds, we told that we are starting to wean from IV meds to prepare for discharge! Naomi was taken off of two IV meds and transferred to oral tablets. Her heparin drip was discontinued altogether.
In the midst of all this excitement, Naomi has some concerns. Her biggest concern is how she will tolerate taking cyclosporine by mouth for the next year. I am concerned about how we will endure another year of it, too….
Her platelets rose considerably today from 29 to 35. Everything else stayed about the same with just small fluctuations with RBCs and Hemoglobin.
Her energy levels are good. I walked in to find her still in bed, but after dressing and fixing her hair, she was ready to play. The ball kept getting stuck under her bed. So, I was happy to remodel the room to give us more room. We played kickball for what seemed like hours. Later in the day, the PT came in and had her playing kickball with a football and then challenged her on the step. Before leaving, the PT talked about seeing if she can bring in a mat and let her do some rolls and cartwheels. 🙂
It was a big mail day, too. A friend sent us all of the Narnia series and some other movies to borrow. A family member sent a card and guardian angel bracelet that Naomi has beside her bed on her medicine tower. A friend of mine from high school who later went to college with Aaron sent a huge collection of Hawk Mountain goodies. Coloring books, activity books, a birdhouse, a matching game and a stuffed OWL!
It was a really good day until the end. Something I have not mentioned here yet is that we started Naomi on melatonin over the weekend to help her get to sleep earlier (so I could get some rest, too!) and to keep her asleep (so the noise in the room did not wake her as easily). Naomi has not liked the idea, but has not totally resisted either, until tonight. She told me “this sleeping pill may work for other children but it won’t work for ME!”
It does however work, because instead of finally falling asleep sometime between 12-3am, she is usually asleep by 10-11pm. We have gotten into a good routine including her lavender foot massage, diffuser full of lavender, bed remade nicely, and then I read to her until she is asleep. From the time she takes the melatonin until she is asleep, it is usually about 45 minutes. But on Monday night, she was really opposed to taking it. It caused quite a commotion between us and I had to let her know that there are things about this situation that *I* do not like either, but we have to each do our part and hers involves falling asleep earlier!
On to Day +20!!!!! 1/5 of the way to HOME