Welcome to Holland

A fellow cranio mom from Atlanta posted this beautiful poem on Facebook. Unfortunately, she heard it at a funeral for a sweet baby girl who passed away due of a birth defect.

We are so grateful Finn's condition was fixable. While I have no idea what it is like to raise a child who has a permanent disability, there were days where I felt I could relate to this. Regardless, I think it is worth sharing :)

WELCOME TO HOLLAND
by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

7 weeks post-op!

Happy New Year everyone! Hope you all had a safe and enjoyable holiday. We had a great trip up north and spent lots of quality time with family and friends.

Finn rounded out the year with his 22nd flight in 12 months. He is still the best little traveler. He is 15 months old today! (Not sure how that happened.) I can't believe all he has accomplished in such a short period of time. We have returned to a totally normal sleep schedule. Actually, he is sleeping later than he used to even before surgery. I don't know if it's a growth spurt, the holidays, his new sound machine or just his New Years resolution but we are not complaining.

I just wanted to quickly mention that since Finn was diagnosed with cranio, I have learned of 5 other people in my life that have had a family member or friend touched by cranio. It is crazy to me that I had never even heard of it and now I am learning of other people who have gone through the same thing. One of the reasons I started this blog was to help others going through this. I was fortunate enough to be called upon for advice when a high school friend's nephew was diagnosed with the same cranio as Finn. She put me in touch with the parents and we had a wonderful phone conversation. I hope the phone call was as valuable as they said it was. I am so grateful to be able to share our story and help calm the fears of other.

There really isn't much to report in regards to his head but I thought I would give a quick update anyway.

His scab was basically entirely gone 4-5 weeks after surgery. The incision looks really good. It is still pink but it is barely noticeable through his hair. 99% of the stitches have dissolved. (Did I ever mention how many stitches he had?? The doctor said somewhere between 100-200. That'll be a cool story when he is older!) You can see the scar when his hair is wet and I combed along the incision so you can really see it in the pictures below. I am sure it will only continue to improve over time.

(Click on the photos below to enlarge.)

 

Here is his profile shot for his 

silhouettes we had made. (1 month post op.)

Reminder - this is what it looked like before.

Recently, on the cranio Facebook support page, someone posted pictures of their son's post-op CT scan images. If you recall, we did't have one done and we were left with a drawing of what was done to Finn's skull. Well these CT images are crazy (and may be hard to look at) but I felt that I should share because it is what I imagine Finn's skull to look like. Their son also has sagittal and the doctor also made barrel staves on his skull. 

The image below is an aerial shot looking at the top of the patient's head.

               (Think of it as a blooming onion.)

(Rendering of Finn's skull.)

You'll notice in both surgeries they did not just cut along the fused suture. According to research, the chances of a suture fusing prematurely a second time are higher if they cut a long the fused suture line.

I have officially gotten used to his new head and I am slowly starting to forget what it used to look like. 

Some days I look at pictures and I think there isn't much change but I try to remember that it's really about what's going on under all that crazy hair that matters. 

One last before and after for good measure.

After

Before

Wishing you all an extra healthy 2014!