Sawyer is 5 months old today. He has grown so much in such a short amount of time. Sometimes I feel like I blinked and it happened. How is it even possible to grown that fast. I love him more every day. He’s learning and doing new things. He can roll! And can he ever laugh. I love that little laugh. And though he’s getting bigger he’s still so little, so very very little. Much too little to see a neurologist. And yet.
On Friday we saw one. For what I thought was going to be a simple check. Our pediatrician recommended us because Sawyers head is in the 99th percentile. She said it was most likely a routine check and probably just a family head size. That’s how I went into the appointment. The actual appointment in my head sounds like the teacher from the peanuts cartoons. And as I walked out carrying this little precious baby the words started to hit me. “Craniosynostosis, Your sons soft spot has closed 13 months too soon, MRI, CATscan, Neurosurgeon, Health care, Risks.” There was a thousand more things said and though I can wiki Craniosynostosis. I still dont have solid answers. So we wait.
We wait, and we wait ,and we wait, and we wait.
That’s the part that’s killing me right now. Not knowing anything and waiting. Which is why I am sharing this. Its the only thing on my mind, constantly on my mind. And if I have to wait this long I can’t not talk about it. We have an appointment to see an neurosurgeon next week. Sometime in between we should get some info on booking both an MRI and a Catscan for him. Then we will discuss surgery.
And the thought of surgery on my little teeny tiny babies head makes me physically sick, this situation has only truly made me realize how lucky we are. Its scary beyond what I can comprehend but its treatable. So many parents get worse news and awful outcomes. We will deal with this and he will still be a healthy happy boy and for that we are extremely fortunate.
I also wanted to say how loved we have felt the last few days. As we started to tell close friends and family, I was very touched at how many reached out to us with love and support. Without that support we would not be seeing a neurosurgeon this fast. We don’t have many friends or family in Las Vegas but the few we do have have done so much for us already. (Thank you so much Matt and Jess.) And of course I could none of this if the one person I love more than anything wasn’t right there by my side the whole time. I am lucky enough to have a husband who is able to attend all these doctor appointments with me. And even though we are having some crappy days, he can not only make me smile but laugh until my sides hurt. I would be nothing without him and I would be a mess right now.
I will keep this updated for those of you who want to follow our story. After all its all I can think of 24/7. Every time I hold that chubby baby with the smile of gold that melts my heart. So for now we’ll keep waiting, and smiling. Life even with its roller coaster rides is still a beautiful thing.