Almost Five Years

I can't believe it has been almost five years since we went through this diagnosis and decision with Claire. I have had several people (strangers) contact me about the blog recently and usually they are asking for an update. I thought it would be nice for me to have something here for people that land here looking for information. I remember the countless hours I spent searching the internet for information and answers and feeling so helpless. If someone has made/is making a difficult decisions like we did, maybe this post will help them.


It was interesting to look back and this blog and read some of my posts. One thing that struck me was the concern over how small her head was. It is strange to me because while her head was indeed measuring very small, I have never looked at her and thought it looked small on her body, then or now. Weird.


Another thing that stood out was that I wrote that the Dr. in Dallas told us that the ridge on her head would likely become less noticeable over time. I didn't remember that. But indeed, I swear I cannot even see it anymore. Just recently I was thinking 'huh, I don't even think I can see it'. So it seems that he was right about that, thankfully.


The last thing I noticed is that I said we felt that we'd maybe always second guess our choice or we'd attribute anything weird to the condition. I can honestly say that I have never second guessed and never attributed or suspected anything about her was related to craniosynostosis. In fact, I would say that we left it behind in Dallas that day and never looked back. I am so grateful that we found that kind of closure to the matter.


So for anyone here because you are in the same place we were almost five years ago (especially with metopic cranio), obviously I cannot tell you what to do. But I can tell you that I am so happy with our decision. Keep searching for answers. Keep talking to doctors until you feel comfortable, if needed. And if you need to go to Dallas like we did, do it. Dr. Fearon is arguably one of the best in the world for this. He has seen it all and I so valued our appointment with him and was so impressed with the time he gave us, both in quality and quantity. Understand your options and the pros/cons and go with your gut and don't worry about what others around you think. I know there were those who questioned our decision but they were not in our place.


Claire is a happy, healthy, smart, normal 5.5 year old. She started kindergarten quite young (having just turned 5) but is loving it and doing so well. I did a quick look through pictures and found one of her having her face painted this past summer and it was a great look at her forehead. So below is her forehead, 5 years later, and ridgeless in my opinion.


To any mom or dad out there scouring the internet like I was years ago, I know how you feel, I am so sorry for your worry and your sleepless nights, and good luck in making a decision that is best for you and your baby!