Monday, November 14, 2016

Big Sister Hazel

Wow, this is officially the longest period of time where I haven't posted a blog update for the Hazel Report, but maybe that's a good thing.  The turbulent waters that Hazel was born into are calming down as she gets older and I think it's fair to say that her vision and hearing loss are now more manageable...not that any of this is really in our control, but we can keep her up to date with check ups and therapy and all that good stuff.  Unfortunately, today is not one of those days where I get to pop on and tell everyone how great it is going...after three long years, our little girl still fights every day for things most of the world gets to take for granted.

Sorry, I wanted to rip off the band-aid first and post a disclaimer that not all news is good news let's get some positive vibes out there and then I'll come back to what's on the horizon for Hazel.

If you didn't already know, Hazel is now a big sister...a very, very proud big sister and her focus each day is 50% dedicated to "Where is Sawyer??" and giving her dozens of kisses on the head.  Our little girls will share the fun fact that their birthdays are one day apart as Sawyer Elizabeth came into the world three years and one day after her sister.  We weren't sure how Hazel would handle sharing the spotlight, especially because she is behind on her speech due to her hearing loss and other factors; this means she is behind on her ability to rationalize, communicate and have things explained to her in a way that she can cope with changes.  In any case, the Lord knew how much we struggle with explaining concepts to Hazel so he just went ahead put love for her little sister directly into her heart.

We were also excited to be a (small) part of helping spread the word on Fearless Hope, the non-profit organization founded by our close friends Dallas and Chris Fears.  Their daughter Finley was born blind in a similar manner as Hazel and NBC 5 recently did a feature story on the foundation and it's origins, so I wanted to share a link below.  We are also attending the Fearless Hope Gala this Saturday 11/19 to raise funds dedicated to helping other families of visually impaired children, to hear encouraging stories of hope from others and to spend time with those who support these special kiddos.


Fearless Hope Gala:

Alright, enough stalling..time for updates.  Like a lot of kids with early cornea transplants, Hazel has one strong eye and one weaker eye, in her case the weaker eye has always been the right.  The right eye has struggled more with glaucoma and eye pressure, it is the eye that usually requires more attention, more eye drops, more surgeries, the list goes on...  To this point, the right eye is also the eye that already had one cornea fail and needed a second cornea to be put in right around this time last year.  We don't have a concrete reason why this imbalance exists, but its a trend that seems to happen for kids like Hazel.  This morning we went in for an exam under anesthesia and the report is that the right cornea is cloudy, the corneal wall is too thick and the whole cornea is failing.  So now we are looking at cornea transplant number three on this eye.  We still have time to help her right eye gain strength and develop, but the more times the eye rejects a cornea or her ability to take is light is impaired the odds of having two healthy eyes reduces.  She is only 3, so this isn't a time to sound the alarms and panic, but Aubree and I both know we need to dedicate the time it takes to do things like patching her strong eye every day.  I'm praying that as she gets older we can reason with her more often and she will wear the patch...but it's been a struggle to this point.

The surgery will be scheduled in the next few weeks, so as soon as we can get her back to the surgery center the better.  Today was not totally unexpected but it was still very defeating in lots of ways.  We know that there is never going to be a point of total stability with Hazel, but it still scares us when the ground below us starts to crack and shake.