Tomorrow (Thursday) Zoe goes in for an endoscopy to see if she has any gut GVHD. I guess they figured that one procedure this last week under anesthesia wasn't quite enough.
Her head looks sliced and diced with her latest incision and hardware addition (giving her a big bump that I'm not entirely happy with). She's undergone a fair amount of pain, but is now starting to sound like her usual chipper self.
Her head is looking a bit strange now that it is being properly drained. Well, as it was pretty strange looking prior to now, I guess I should say it has taken on a new quality of strangeness: it's looking deflated.
She has dips and sink holes where fluid had previously been bulging out. The picture below shows a little of this --look for the bone ridge sticking up towards the top of her head from this perspective.
It's not all that dramatic looking in the picture, but her new head gave me the heebie jeebies for the first couple days. Now it's just incorporated into my sense of how she looks.
SCCA is starting to get things in place for our "exit conference"--Day +100 is when they set us loose and has us taking Zoe to her pediatrician for ongoing check-in's. We need to do a little investigating to see if we might need to find someone new who has experience with post -transplant children (not quite a common specialty), or if we will stick with her own pediatrician who has been great at looking into things she isn't familiar with.
We are getting Zoe set up with an early intervention program that will help her move forward with gross and fine motor skills. In my mind we can't get them started with her fast enough as she is so often bored from not being able to do much to entertain herself. She has the active mind of a 15 month old, but motor abilities of a 3 month old. She can't see things around her, nor move towards things that she might feel.
An ophthalmology appointment she had yesterday confirmed that she is blind as a naked mole rat. Vision that I observed she had in the hospital, that of being able to register light changes, was likely done-in by this last experience of hydrocephaly (fluid build-up in the brain). It wasn't surprising to hear that she is blind, but there was a part of me that was hoping for a miraculous vision recovery. The doc did say that well, given her young age, there is a slim chance that some recovery might happen, but I really got the sense that he didn't think it was likely.
Last year at Easter I was asked what one word represented what I wanted to welcome in for the year that followed. With my young 3 month old baby just beginning to manifest vision problems and other inexplicable issues, I stated "Miracles".
We have gotten some of those. That a stem cell transplant even works is a pretty damn big miracle in my book.
This year my Easter wish is for "Transcendence."
On so many levels...
1 comment:
I just had this image of Zoe making a decision about the whole vision thing. For what my 2 cents are worth, I would bet she will see one way or the other. If she turns away from eyesight, it will be more than made up for by her spiritual sight (i.e. deep understanding she is gaining.)
Easter time reminds us that a really smart teacher once saw there was nothing he really needed to overcome ultimately but his own thoughts. And so he did.
Without the noise of the egoic false thoughts making him distracted by the dream, he was naturally in touch with his REAL mind of our Source...and then to those of us still dreaming, he appeared to overcome everything.
And we have that promise too because we were all there with him. Zoe, too, of course. And as you all seem to walk the path of healing, you take us all with you....it's a holographic Happy Dream. :)
Hoping you feel the Post Comment hugs I send you.... :) Loving you all,
Laura
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