Tuesday, March 7, 2017

Checking In

Hey Everyone.  It's been a few weeks since Hazel went though another cornea surgery and I get questions pretty regularly about how she is doing...which is probably a less-than-subtle hint that I should publish a quick update for everyone!  If you're keeping score at home, this was her 5th overall cornea surgery...which breaks down into 4 cornea transplants in the right eye, and 1 cornea transplant holding strong in her left eye since 2013.

Day After Surgery - Cornea Transplant #5


Overall it's not hard to say that Hazel is doing really well despite having some side battles with things that normal 3-year old gets to battle during the shifting season of cold/warm Texas weather.  She had a double ear infection this month and a short period where she had a fever and stayed home from school with some stomach issues...not great things to add to the list when she is just trying to get back to the normal flow of life.  But I guess in some ways the normal flow for Hazel still involves lots of extra junk.

...ear infections, cornea surgeries, fever, surgery post-ops, tummy aches, exams under anesthesia....

What's normal for Hazel is not normal for everyone, but for now she doesn't know it and she does the best job that a toddler can do to be cooperative.  She is a happy kid in spite of all she endures.  My hope is that one day all this activity slows down and normalizes...that Hazel can spend her time being concerned with trivial topics like seeing a Disney Movie or going to the park instead of having another trip to the surgery center around the corner.  Only time will tell.

So what's next?

We have appointments with our ophthalmologist later this month to see if it's time to start patching her strong eye in order to strengthen her weak eye.  In the same week we will have our third post-op visit to Dr Bowman to check on the health of her cornea and the red reflex that you expect to get from a clear, healthy cornea.  After that, we will likely schedule an EUA to check on her eye health, get eye pressure measurements and remove the sutures in her eye -- possibly in late March or April, but that decision will come after meeting with Hazel's medical team.

I'm no more jaded today than I was three years ago that Hazel has the support that she has.  She has medical support, family support, friend support and the support of prayer warriors who lift pray for her weekly or more.  One day I'll be able to tell Hazel about the countless people who love her and care about her well-being, I imagine that once she can grasp the concept that will be a special day for her and for her mother and I.  So if you're in that group that still prays for her, I am thankful for you and thank God for you.  We're three and a quarter years into a long journey and there is still lots to do.

Until next time...


3 comments:

  1. Our prayers continue for all of you and especially precious Hazel. You have a magnificent gift as a writer and someday, we may read a book you have authored about this journey. Thank you have your updates. Cheri' & Ed

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  2. Continued prayers for Hazel, and your family. I do think you should print each update out, and when she is five put a book out with her fight and strength in just 5 short years.

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  3. Hi there! My name is Jazmine and my daughter Callie was born with 6p25.3 chromosome deletion. My husband and I have been following your beautiful daughters blog since Callie was born in October 2016. We don't know anyone with chromosomal abnormalities so Hazel's blog gives us a window to see that Callie's world isn't so small. Thank you for opening up and sharing. We more than appreciate it. Best wishes to your family!

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