Friday, April 1, 2011

Craniosynostosis Surgery- a year later


Before my son was born and diagnosed, I had never even heard of it.  Once he was diagnosed, I had to ask the doctor to say it again and again, then finall had her write it down so I could come home and research it.

Now, nearly two and a half years after that diagnosis, not only have we had two surgeries and a whole host of complications to go with them, but I could probably bore you to tears spouting more information, facts and stories than you ever wanted to know.  I could probably challenge most pediatricians in a game of "Cranio Jeopardy" and win. (And wouldn't that be a riveting game show?)  I could tell you the best-known surgeons in the US, (and Great Britain for that matter), I could decribe in depth the difference between the endoscopic repair and the more traditional CVR, and I could give you all the secrets you would need to spend a week at a Children's hospital. 

This week marked a year since Max's second big surgery.  I can't say that I've been feeling nostalgic, but I've done more than a little looking back this week and thanking the powers that be that cranio isn't something we worry about on a day to day basis anymore. 

In general, we are satisfied with the results of the second surgery.  To an untrained eye, (in other words, to anyone except me and other head picking, cranio-obsessed moms,) he looks like any other little boy.  His long crazy curls cover up the fact that the top of his head has more bumps and ridges than a moguls course.  The poor boy will never be able to rock the shaved-head look. He still has some weird lumps on his forehead, some narrowness above his eyebrows, and every so often we'll see what has to be a screw poking out underneath his skin, but there's nothing that would make us consider another surgery for a second. 

I mean, really, could he get much cuter?

I called yesterday to make an appointment for his one year follow up with the craniofacial surgeon.  Just talking with someone at the hospital made me start to sweat, and it took close to a half hour after that phone call before the adrenaline stopped pumping.  Just envisioning being back in that hospital, no matter how benign the reason, gives me a minor panic attack. 

But for the most part, the medical chaos that followed us for the first eighteen months or so of Max's life seems to have subsided dramatically.  He hasn't been to the doctor more than once in the past six months, which is quite a change from the first year of his life, where we were lucky if we went a week without one doctor appointment or another!  He is a bright, happy, cheerful, busy, trouble-making, tantrum-throwing, house-destroying toddler, and thankfully, we wouldn't have it any other way. 

To know Max is to love him.  You can't help be captivated by his crazy hair, his infectious laugh and his hilarious take on life.  (And yes, I realize that his hair is long enough to take over the world, and yes, I probably should get it cut.  But I can't bring myself to do it.  It's his third head of hair.  It's never gotten this long without someone strapping him to an operating table and shaving it off, then handing it to me in a little plastic bag marked "biohazard."  So we're probably gonna be keeping it long for a while yet. And in my defense, it doesn't always look this crazy!) You would never guess all he's been through in life just by looking at him. 
 A year ago, we were sitting in the Pediatric Intensive Care Unit at Primary Children's Hospital.  Max's swelling was at its peak, and we were all praying that his sodium levels would get under control soon so we could be moved to a regular room.  We were trying to find a pain medication that would do the job and desperately praying for comfort for him and for us. 
I still tear up when I see this picture. 

Today, Max spent the morning playing in a cardboard box with his sister, jumping on the trampoline with the neighborhood kids, and watching Elmo videos.  What a difference a year makes.


  1. Wow. The things we are *not* able to take for granted...

    What a beautiful boy, and congratulations (if I haven't told you yet!?) on the new one!

    I can relate to your feelings about the hospital - my baby was also there for much longer than I'd have cared for, for reasons which were medically imposing - now I'm a medical student so I can help others as we were helped. Keep the faith!

  2. Wow. I googled it and I hope the way you got the information was less scary than that. Why would someone list the rare cases first?

    How wonderful that he is doing well. I remember when you first posted his post-surgery picture and it was so heart-breaking. Now he looks like a hear breaker in a good way!

    Love the hair.

  3. Happy Anniversary! I can't imagine how painfully that must have been for your whole family. Ouch. I'm so glad all is well now.

  4. Well, I'm newer to your blog and I had no idea. The picture of him in the hospital made me sad. The picture of him in the cardboard box makes everything better. He is a cute guy and I lOVE his hair.

    Have a great week!

  5. Holy cranio batman! Has it really been a whole year?? Man oh man, time does go by.

    Well, he looks great! And I adore his hair!

    I know you said his forehead is still bumpy but you can't tell in the pictures. He looks so good!

    Alayna head is still a bit on the elongated side and if you were to run your hand over her head, you would feel a big bump near the front where her plates had bunched up after surgery. Hopefully some of it will smooth out over time but, I don't know, we'll see!

  6. I love that head of hair! I wouldn't cut it either! I can't believe it's been another year already. He looks great!

  7. I am a Cranio mom, facing a second surgery in a couple of months. Your blog could have been written by me. I am comforted by your experiences and with all the best for Max and your family!

  8. hej my know 10 monhts and when she was 3 monhts she had a cranio surgery and im no a litt worried because her head its not look normal so im scared

  9. Hej my babygirl is.know 11 monhts and when she was 3 months she had a carnio surgery.And today i looked on her head and its looked diffrent i mean not know scary :-\


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