7 years post op

Happy Cranioversary to our sweet girl!

I'm not sure how it's possible that it's been 7 years since that emotional July day. She's doing amazing and we are so grateful that we were able to find a doctor that would perform the endoscopic surgery on her. If I could do it all over again, I wouldn't change a thing. My gut instinct led me to fight for the endoscopic surgery and I know it was the right decision for her. I pray that she continues to do well and that her journey with 'Craniosynostosis' is in the past. Here'a a little throwback vs this year on July 4th. She's getting so big!

July 4th 2020

2013 - a week before surgery

“Something is wrong with my eyebrows”

I knew it would happen one day, the day she’d look in the mirror and ‘see it’.  Left/Right Coronal Craniosynostosis and the asymmetry it causes is much more obvious in the mirror image. Tonight when getting ready for bed she looked in the mirror and said, “Something is wrong with my eyebrows, they look weird”.  I asked her what she meant. She said “One is higher than the other one” We have talked to her about the surgery and how the doctors ‘fixed her head’ but not in a lot of detail. I told her that the Craniosynostosis was on the left side of her head so the left side may not look exactly like the right side and that she was beautiful.

We always said that if her asymmetry bothered her as she got older, then we would address that then. We will see but we are thankful she has done so well and hasn’t ‘needed’ any other surgery.
With that being said, I wanted to follow up about her eye condition. As of now, we are just waiting it out and seeing how her eyes do. They seem to have improved so we are not rushing into surgery. If it starts to get bad again and bothers her then we will revisit that option.

I hope everyone is doing well and staying healthy in these crazy times.

I ordered this shirt a couple years ago from Cranio Care Bears and had forgotten about it until recently 💕 

I can’t believe our sweet girl is 7. As I edited her birthday pictures, reality hit. Picture after picture I couldn’t deny what I was seeing...

Last week I took Alice to the ophthalmologist because of concerns. Just when I think we are in the clear, I get a reminder that craniosynostosis will follow Alice forever. Alice will very likely be having eye surgery in the near future. She started having very noticeable problems again about a month ago. The drifting has gotten bad and it’s really bothering her. I am so reluctant and just want to avoid the surgery but my gut is telling me she needs to have this done.

When she was cleared a while back, it was because she was able to control the drifting. She could pull it back in on cue. So they said she no longer needed the surgery. Now it is happening so often and she is not controlling it well. I don’t want her being bothered by it and blinking constantly. We’ve tried some vision therapy stuff (like we did before) but it hasn’t helped yet. We are going to give it more time then make a decision. 

I tried so hard to hold back the tears in the office that day. The word ‘surgery’ just triggered me. I couldn’t fight the tears. Every time I talk about it, I cry. The thought of her having to go through something else, after having such a big surgery when she was a baby, just kills me. No parent likes the thought of their kid being put under anesthesia. The thought of my other kids having surgery on anything is upsetting as well, this just triggers me in a different way. It’s so hard to put into words how it makes me feel. I know this is a very small surgery compared to her craniosynostosis surgery but it doesn’t make it easier. I knew my friend in Texas would understand how I am feeling so I messaged her right away. Her son also had surgery for craniosynostosis when he was a baby so she “gets it”. She wishes, like I do, that we could just put this all behind us. 

It took me a week to find the words. Just wanted to give a quick update Please keep her in your thoughts. I will keep you posted. 

Happy 7th Birthday Alice!

Can’t believe this sweet thing is 7 years old!