Friday passed without much fanfare, but it marked a milestone: 2 years post-op for Max's second surgery for metopic craniosynostosis.
Max's first 18 months were difficult ones. It felt like one medical problem, one specialist, one hospitalization or surgery after another. Craniosynostosis was such an ugly word that took up so much of our time, energy and emotion.
But to look at Max now, you would never in a million years guess what he's been through.
I might be a bit biased, but isn't he adorable? We are so proud of him. He is such a smart, charming, funny little boy, who is meeting all his milestones and has grown out of all his initial feeding problems and other health struggles.
I am so grateful that the majority of the cranio ugliness is behind us. We are supposed to follow up yearly with our cranio facial surgeon, but for various reasons we find ourselves right now without health insurance (for some strange reason, it's really hard to find a company willing to insure a 3 year old who has had 4 surgeries and 4 hospitalizations,) so we'll wait on the follow up visit for now.
For the most part, we're pretty satisfied with the results of the surgeries. The top of his head is ridiculously lumpy and bumpy, but he has so much fabulous hair that no one would ever notice. There are still a few things that concern me- he seems to have some indentations above his eyebrows that are getting more pronounced, and there's some weird ridges on the edges of his forehead. But let's be realistic: I'm probably the only one who would notice them in a million years anyway.
I'd be lying if I said the journey we took with him wasn't the hardest thing we've ever done as parents. I'm also very grateful to say that craniosynostosis occupies very little of my time and energy these days. And that's just the way I like it, thank you very much.
On Mastery
1 week ago
Hooray for Max! I love that kid, too much cuteness going on for me. And have we moved on from the Woody hat in exchange for a Superman cape??
ReplyDeleteI can't believe it has been that long! Wow! COngrats on the anniversary!
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