Snow and Eyes

Tim:

Yesterday a big snowstorm blew through Colorado.  The Denver area received over a foot of snow, so we hunkered down at the hospital for most of the day.  Liz worked with the nurses and therapists while I worked remotely from my laptop.

The Children's Hospital has been so full and sleep rooms have been so hard to come by lately that we've
moved into the Ronald McDonald house in Denver for the time being.  The one closest to the hospital was full, and it was a bit of an adventure driving in the snow at night through a shady part of town to get to the one in downtown Denver, but having a comfortable bed to help ease our exhaustion was well worth it.

 A mansion built in 1911 is now the Ronald McDonald House in Denver.  It was rebuilt about 10 years ago.

A view of our new bedroom

We heard that in the last 14 years, our neurooncologist has only seen 8 cases of Ependymoma in infants under a year of age.  Two of those eight cases are our Michael and Hazel, in rooms next door to each other on the 6th floor. It's uncanny how similar their story is.  Nurses are starting to get confused which one is which, and will say things like, "Now Michael isn't supposed to eat anything for the next few hours since he's going into surgery" and we have to remind them that Hazel is the one going into surgery today, not Michael.  We have to be really vigilant and make sure they have different nurses assigned to us and Hazel to minimize the confusion.

Yesterday we heard some really tough news.  We've been concerned with Michael's vision lately since his eyes don't seem to track objects very well and he doesn't appear to be able to focus on us.  Occasionally if we get right into his field of vision he'll seem to focus just for a brief moment and smile, then he loses focus again.  At first we wondered if it was because his eyes are out of sync so he's experiencing double vision.  But we've had a hunch that it was more than that, so we called in a pediatric ophthalmologist to check it out.  It's a bit tricky to give an eye exam to a seven month old, but there are things he can test.  He had a smartphone app with scrolling white and black vertical lines that even an infants eyes will track naturally.  He also shined a bright light in Michael's eyes to see if Michael would shy away from it.  Although his pupils dilated with the light test, he ultimately failed both tests.  Additional examination showed that Michael's eyes look structurally fine, so there's likely a bad optic connection somewhere in his brain.  So as far as we can tell, Michael is essentially blind.

That news came as a huge blow to both of us.  We don't know if it's temporary or permanent.  In fact the doctors are really puzzled by it since the tumor wasn't in an area that should have affected his vision.  Sometimes radiation therapy can cause vision problems, but he hasn't received any of that yet.  The only explanation they have so far is that perhaps the pressure in his brain from the tumor somehow messed up his vision, but even that seems to be a stretch.  So we really don't know what to make of it.  There is an excellent pediatric ophthalmologist in Fort Collins, we'll take him there next week to run some more tests and see if there's anything we can do.

We know the Lord has a plan for Michael.  What that plan is exactly, seems to elude us more and more with each challenge that we face.  But we are extremely grateful for each day we get to spend with him on this earth.  And we are so grateful for the wonderful support and prayers from family and friends.  It's very reassuring to know that we're not facing this alone.  And our children back home seem to finally be over their illnesses from the last few weeks (knock on wood!)  We miss them terribly, but are so grateful to Grandma Bellamy for working tirelessly to take good care of them.