Tuesday, May 9, 2017

High Five!

I know....a week in between blogs when Hazel has an EUA is too long...I need to do better.  That being said, today is one of those times where I'm actually excited to do some extra typing after a work day where most of my day is spent with my hands on a keyboard.

The exam on Wednesday was a total success from a medical perspective...and honestly not too bad from a pre-anesthesia standpoint either.  Hazel is old enough now where we can tell her things like, "Today is Monday...and on Wednesday we are going to go see Dr Bowman!"  and she understands what we are saying.  We aren't quite to the point that we can explain surgery vs. office visit or exam under anesthesia vs. a painful surgery -- but we are proud of how far she has come with her communication skills.

A typical EUA is not a long process, something in the range of 30-45 minutes before they are completely done and we usually get pulled into a private room before she is awake for a report.  Dr Bowman was up first and the joy on his face was more apparent than usual.  He was thrilled with her progress and the way the cornea is bonding with her eye, Dr Smith was next and had Dr Dao along side...both with bright smiles and a certain skip in their step.  Hazel's eye pressure was down to a normal level, the nerves looked healthy and we were able to tweak her glasses prescription.  We  were event able to reduce the steroid drops needed in her right eye.  I like to imagine that if these weren't skilled doctors at the top of their professions that they might have started throwing around high fives and chest bumping like a team that just brought home the championship trophy.    I am probably remembering the vibe in the room the way it seemed in my head, but we don't get many reports where there is good news that isn't followed by bad news or something else that we need to watch closely.

Hazel usually needs some time to snap out of the anesthesia and doesn't like all the cords and stickers and band aids, which is nothing new.  But on the way to the elevator she snapped out of it like the little actor that she is and suddenly perked up..."All done Dr Bowman!"...our little girl is growing up.  I'm sure we will be back at the surgery center at some point and things won't always have a positive outcome, but I'm taking our victory and running with it this time...we'll cross the next bridge when we come to it.

Wednesday was a good day.

Monday, May 1, 2017

Hazel Checkpoint

Hazel is now closer to four than three, which as I type it sounds a lot crazier in text than it ever sounded in my head.  Part of her long-term treatment and care plan is to have regularly scheduled exams under anesthesia so we can do a progress check on Hazel and anything else that would be beneficial like a new prescription for her glasses.  In this case, we are a little overdue to remove the sutures in her right eye that need to be taken out from her most recent cornea transplant.  So if you have a free minute, we'd appreciate prayers for safe anesthesia and good result this coming Wednesday!

All of the check-ups since the cornea surgery have had great results and Hazel is showing some progress with the vision in her right eye.  We have been working with her on patching the left eye in order to strengthen the right eye...with some varying degrees of success.  She's a crafty little girl and finds ways to bend the eye patch to see things better or tries to negotiate her way into cutting her patching time short.  We encourage her to play with her baby sister or ask her to read how many fingers we are holding up...and she does pretty well but there is still a long way to go.  It's still crazy to think that we've been blogging and tracking her progress for so long :)

In the early months of tracking Hazel's progress, we became friends with the Fears family and their daughter Finley who has a similar story to our daughter and their journey through pediatric eye issues.  The connection of our families encouraged the Fears to start a new organization called Fearless HOPE, which is Christ-driven and aims to help provide hope to children and families of children who are experiencing vision impairment and loss.  Aubree and I are testaments to the type of emotional support and information that families need to help give their children the best care available.  We share resources, we share stories and we want other families to know that they are not alone!!

On Saturday May 13th you will find Hazel and the rest of our family at the Race 2 Vision event that supports Fearless HOPE and the great work they do.  I don't call in many favors or ask for people to contribute to fundraisers, but if you are looking to give back to your community I can tell you that there are very few organizations who are trying to connect families like ours who need support.  

The Race 2 Vision event is a family-friendly event with a bounce house, face painter and some kids who have benefited from being involved in Fearless HOPE will be running to raise funds.  Hazel's tiny legs aren't quite ready to do a "per-lap" fundraiser but if you'd like to donate on her behalf we would EXTREMELY grateful and you might get a big ol' Hazel hug out of the deal.  I'll include the link and information below about the event, but it's going to be a great time of fun and celebrating the great things that Christ in doing in the lives of these kids.

Fearless Hope Race 2 Vision: http://fearlesshope.org/race-2-vision/

When: May 13th at 9:30 am
Where: Wakeland High School Track in Frisco (10700 Legacy Drive, Frisco)
Why: Because you love Hazel and she would love to see you :)