Zoe’s Story

Site created on August 6, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Shari Karnowski

Zoe is doing really well! Thanks to all who have asked for an update. We had her first post-surgery follow up with the neurosurgeon almost 2 weeks ago. She had a repeat MRI which was good, and he could tell her left pupil was responding better to light. Although the left eyelid hadn't recovered much at that time, the Dr felt there was definite improvement. As luck would have it, her eyelid started to open a bit more a few days after that appointment!
Yesterday we had Zoe's second appointment with the ophthalmologist, who commented that while there are still some residual "deficits" with the eye, he too noted significant improvements since her last visit. Her left eye isn't yet moving up as well as it should, though her double vision when looking down or to either side is gone, and she could still have problems with double vision of she's really tired, eg at the end of a long day. Her peripheral vision is much improved with that eye cracked open a bit. He's still monitoring the eyelid height, and said most likely any recovery will happen within the first six months after surgery. Beyond that if she's not returned to her baseline he'd refer her to a plastic surgeon for a procedure that should help. Fingers crossed that won't be necessary. 
Otherwise Zoe said her headaches are gone - not that she ever complained about headaches, but I think she likely had some pressure in her head from the hydrocephalus prior to surgery that has now been resolved. Zoe will still need checkups annually for about 10 years for monitor her for any residual issues from the hydrocephalus and/or cyst. But things are looking good.
Lastly, after 13 years of nightly injections, Zoe is DONE with her growth hormone shots! Again, she never once complained about having to do them, and we're so grateful she had the opportunity to get them as they have improved her health in so many ways. She is truly a rockstar!
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