Update on Ronans vision issue(s). Unfortunately, we have seen his left eye turn inward slightly (only when glasses off) and his right eye seems to turn most times when his glasses are off. Not for long, but its happening pretty consistently. UGH! His vision teacher came today and we had a long chat about his new eye funniness. We agreed it made sense for us to make an appt at the Eye Institute in Philly soon, b/c hes a complex case and we were both pretty unsatisfied with the feedback from Dr Liu (he dismissed the connection b/w this and his hemispherectomy). His case is complex, b/c he has the homonymous hemianopsia, pretty significant far-sightedness (why he has glasses), and now, strabismus (commonly known as lazy eye!). We also have another eye appt with our local CHOP doc, Dr. Mills, who seems pretty good. For science/anatomy nerds like me, you can learn more about hemianopsia here: hemianopsia.net/ Im trying to stay calm, but I fear that the strabismus will worsen over time --- and that could eventually cause vision loss. Glasses are the first treatment, then potentially patching... Then possibly surgery -- which sounds crappy. In any case, Im feeling frustrated that this little man has to overcome, yet, another obstacle. AND that doctors dont seem to have a clue about the affects of the hemispherectomy on vision -- beyond the field cut. I am no doctor, and I truly appreciate many of our docs, but I do believe that often, I know more/have more data points than the docs, on how this surgery affects kids. Mostly b/c of the amazing parent networks Im a part of... Im realizing that a) the patient population is relatively small, and b) there are not many studies done on our kids... WHICH SUCKS! And makes me sorta wonder if the docs have any better guess/instinct/rationale than we as parents do!! To end on a good note, Ronan seems blissfully unaware of any of this... and keeps on smiling, scooting and trying to talk. Tonight he mimicked me for a while... Socially, hes really taking off. And, I feel like his right arm is starting to make some progress. I feel him squeezing me more with his arm and he will sometimes grip my finger.
Posted on: Thu, 11 Sep 2014 23:15:21 +0000
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