Day +97

We're closing in on that 100 day bench mark. SCCA and I are at odds on what day it actually is--I say Day +97, they say Day +96. I like my number better.

Today we had the big "exit conference" with the current attending, the BMT team nurse and fellow to go over Zoe's history to date and to outline a plan for the future.

So far they consider her to be doing remarkably well, especially given her particular disorder and particularly considering that she had a peripheral blood stem cell transplant. As I had mentioned before, osteopetrosis has a high rate of graft failure, and pbsc transplants have a high rate of GVHD problems. So far the graft is holding strong, and her GVHD problems seem to be limited and responsive to treatment.

Last week they added a new steroid to the mix to treat her mild stomach GVHD (bringing her med pushes to five times a day--woo hoo). A few days into the new routine I noticed that Zoe had a new edge to her personality. Her happy highs were very high--and her lows were maniacal-Jack-Nicholson-at-the-door-with-a-bloody-hatchet types of rage-fests.

I started to wonder who had swapped my sweet daughter with a crazy pixie.

Then I realized, ah yes--'roid rage again. And though the team declared up and down that the new steroid didn't generally have the side effect of personality changes, they backed off her dose a bit. Within a few days she was back to the girl we knew.

We are getting Zoe set up with the Boyer Clinic to help her move forward with gross and fine motor skills. Last week their vision educator, a lovely woman named Mary Ellen, came to assess her. She works with kids of all vision levels and said that unless the child doesn't have eyes, she never assumes that they have absolutely no vision. She told us that she knows two blind adults who use "echolocation" to move around without a cane. She said that one is so proficient at it that he rides his bike around the city. Yee-oww!

Yesterday the PT, Sarah, that we will be working with came to assess Zoe. The tests Sarah did with her described Zoe as having the gross motor skills of a 4 month old, and the fine motor skills of a 9 month old.

Zoe's got the smarts though. The main challenge is to figure out how to motivate her to WANT to reach the developmental milestones. She's spent so much time on her back that she prefers to be in that position. When I sit her up she'll humor me for a bit--and then throw herself backward, or scoot herself down--whatever will get her back on her back. She'll then grin in a self satisfied way and kick her feet enthusiastically.
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I was contacted by a lactation consultant that I corresponded with prior to the transplant. She wanted to know what I had done regarding the whole breast feeding issue with Zoe, and I felt a bit chagrined and defensive to have to respond back to her that I didn't, in fact, breast feed Zoe as I had intended to do during her transplant. I had good reasons (as detailed in earlier posts on the subject) backing me up--and listed them off to her.

Her response surprised me: she said that I probably now had more knowledge on the subject than many people and that, if I were to write an article for the Journal of Human Lactation on my experience and findings, it would most certainly get published. Not a scientific article by any means, but one that outlines the exploration process I went through and the answers that influenced my outcome on the matter.

The idea is certainly ego stroking. But, I would actually have to get my brain working to do it.

Am mulling over it, enjoying the prospect, and...procrastinating.