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Dear family and friends,
Attached are two photos of Eliza in the bath, an
experience she actually *enjoyed* (in other words,
didn't scream through) for the first time ever the
other night!
Yesterday, Eliza had a CT scan (essentially a head
x-ray) to confirm that her shunt is functioning
properly, that is, draining the excess fluid that was
accumulating in her brain due to the hydrocephalus.
The good news is that it is working as it should. As
for any other details, the neurologist wasn't terribly
forthcoming. When asked if her brain looked better or
worse (as far as atrophy is concerned) on this scan as
compared to the last, his comment was that it didn't
look better, and as far as being worse, well, the
damage was so profound before that it doesn't really
matter. Not exactly the level of detail I was hoping
for, but he refused to be pressed for more
information. He doesn't see any reason to put her
through another MRI, so I guess we won't know any more
about the extent of the atrophy in the forseeable
future. Tomorrow, we'll start her on one more
anti-seizure medication, one that hasn't worked for
her before but might hopefully work now (not very
likely, but worth a try).
We do not yet have any results from the muscle biopsy,
and it may well be a while yet before we do. We're
told these tests can be tricky and time-consuming.
We're also awaiting blood test results checking
Eliza's pituitary function, as she has not been
growing particularly well recently.
That's all the news that's fit to print, as they say.
Love,
us
