Zoey’s Wondrous Journey – 11/18/19 Update

Back in July I updated you all about some of the new things that we are working through with Zoey. There is STILL a ton of questions about what this means. In the months that have followed, we have found that with the exception of the genetic marker for Diamond Blackfan Anemia, she has NO other identifying characteristics of those whom have the condition. All of her testing and labs have come back normal.

That is a strange word in our home. Normal. What does that even mean? To us, normal would be a boring, meandering, listless river on a bland landscape. Though a break from the ominous, crag capped rapids would be nice from time to time. But, this is coming from someone that has been Chaotic Neutral their whole life. So take that for what it is worth.

Now, there is a whole new set of specialists that are following Zoey from afar. “She is unique” should be scrawled on the outside of her medical records to make it clear that, we know.

Recent Clinic, New Information.

But, this aside, and folding in the uniqueness of my beautiful daughter, we did get some interesting news at her last Craniofacial Clinic appointment.

To fill in those of you that may be new here, my daughter was born with a condition called Bicornonal Craniosynostosis. You can read more about that HERE.

TL/DR:Cranio’ means skull. ‘synsotsis’ means fusion of adjacent bones. The normal skull is made of us several plate that are separated at birth to allow the brain to grow. Over time these spaces, called sutures, fuse naturally. However, in 1:2500 births in the US one or more of these spaces are already joined when a child is born. This is craniosynostosis.

But, as for the interesting news. So, you may remember that with the realization of Diamond BlackFan Anemia being a, thing, for Zoey, that the need for her upcoming surgery was delayed. Well, in that time her head shape is starting to correct itself? It was clear by the tone of voice, and the face of her craniofacial surgeon that this was something, different. In fact, this is so different that her doctors have not seen, nor heard, of this happening. So, we are delaying her surgery for AT LEAST 6 months, perhaps much, much longer.

This is huge, yet par for the course. We have heard her whole life that we need to wait for Zoey to show us what to do, and what is going on. Step by step, she has tested the limits of understanding when it comes to Craniosynostosis. So, excitedly and elated, we chalk another win up for Zoey.

All In All…

All in all, Zoey is doing great. She is a brilliant seven-year-old that stand fearlessly facing the world. She is showing countless signs of independence, compassion, and understanding FAR beyond her years. I am constantly in awe of her, and so happy she calls me dad.

Stay tuned for more updates, and the beginning of a regular blogging schedule!

Live big, love bigger, and be kind, always.

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