Today I realized that it's been exactly one year since Zoe's diagnosis. A year ago, these very minutes I was writing my first blog post, reeling from the news we had just been handed hours before.
What a crazy, crazy year it's been since then.
And~
Zoe is here, she's alive, and she's thriving.
I had no sense of this outcome, no mother's intuition about how it would turn out. In the months after her diagnosis, but before her transplant, I would look at her sometimes and know that she was going to make it. But just as often I would look at her, heart aching, seeing the funeral with all her favorite music playing. Those visions just knocked me flat.
It was quite a head space to occupy for a good while there--we've only really became convinced of her sticking around with us for awhile yet in the last few months.
Jeff and I have grown and changed and stretched and broken and grown some more, but mostly we still feel like we're treading water (however, with less anxiety and thrashing about). I wish I could say that I've grown into a more spiritually advanced person, a more patient person, or a more gracious person for the experience, but mostly I just feel more tired and more easily irritated. I hope this won't always be the case though. I think that as Zoe progresses (and sleeps longer!) I may finally get back to my old, less irritated self.
Zoe continues to be the powerhouse of vitality and regeneration that she is. She had her Hickman line taken out on the 11th as scheduled, and it's been pretty smooth sailing since then. She's had a couple pokes for blood draws and only fussed a bit.
She seems so close to crawling finally--she's rolling from front to back, back to front, scooting on her back, reaching beyond her immediate circle of comfortable arm's reach. She finally seems motivated to explore beyond her immediate vicinity. As such, she's finally graduated from being able to lie on the couch without supervision, to having to be placed on the floor so that she won't roll off; a milestone most babies achieve by the 4th or 5th month. So, she's close to 20 months, but all good things..., right?
She's been strong enough for all of this physical work for a couple months now, but she didn't seem interested in moving beyond the comfort of lying on her back all day. I had started to describe her as "not gross motor skills delayed, but motivationally delayed". Motivation is finally kicking in in spades.
Yesterday we took her in for her check up with Dr. Carpenter at the SCCA. All was pleasure at her progress. There had been a concern arising last week as her lab reports had shown that one of her liver enzyme levels had shot up to quite high levels (not good). Only two things can make a post transplant's liver enzymes shoot up: adverse drug effects, or GVHD.
Her pediatrician had us hold one of her drugs for the week to see if this week's lab reports improved. They did, significantly (yay!)--but Carpenter said it could have been a coincidence, "hard to say." He didn't want to start any taper of her steroids or immunosuppression drugs even though she's been doing so well. His reasoning is that she had an unrelated donor's peripheral blood stem cell transplant--and the risk of GVHD is very significant with such.
Best not to rush to rock the boat.
The plan is to wait until Zoe stabilizes from the placement of her G-tube. G-tube? Newest development.
Currently Zoe has an NG-tube (nasal gastric) that goes through her nose, down her esophagus into her stomach for the purpose of feeding her and administering meds. A G-tube is simply a gastric tube that is surgically inserted through her abdominal wall directly to her stomach. A cap keeps it closed while not in use and the whole thing hides under her clothing. Without the NG tube there is no longer a risk to her pulling it out and aspirating the formula, there is no need for tape to be perpetually on her face, she no longer has a visible statement to all who look at her that something is "wrong" with her, and she will no longer have a tube dangling down her throat. This last part is possibly the best perk: without a tube in her throat she may feel more inclined to actually start swallowing food again.
It means surgery though, and another appliance sticking out of her, when we had just gotten rid of the central line. It does bring a greater risk of infection as well. However, the risk is not as strong as the Hickman risk was, and we did pretty well with that. I talked to a couple people who said that the G-Tube is great--one of them a mother of a small child who had one put in after a long time with an NG-tube. She said it was a God-send.
So, once the G-tube is placed and Zoe seems to be stable and business as usual after that, THEN Carpenter said he will look at tapering Zoe's meds.
Something out there is determined that I will learn patience. Eventually.
