Monday, June 27, 2011

Just checked my mail...

I always like to check the mail, even though nohting really comes without a stamp that says "You're pre-approved!" but today there was a package waiting for me, and a huge envelope. Well I decided to open the envelope first, as it was from Mayo Clinic. Inside was a 17 page booklet, the first 2 pages were appointments that have been made for July 5th followed by 15 pages of instructions. My eyes were welling up as I moved on to the package,

The package had a return address of Cranio Care Bears, and of course I got excited. My wonderful new friend, Shelby, is a Cranio Advocate for them and told me a package would be coming. It couldn't have come at a better time. It was full of fun stuff- hats, slippers (for both me and Casey), flip flops, wisps, candy, hats, some toys, a super soft blanket and a journal...but what really got me was the beautiful prayer chain they sent.

Now some of you who know me well, know I am not a very religious person, but this moved me so much. Those tears that were welling up earlier were just coming out now. Beautiful and colorful, it is meant to hang from Casey's crib after surgery and there it will remain until we go home where it will find a place in Casey's nursery. It has advice from Cranio families, a little note from a young Cranio kid, and quotes that will stick with me forever, like "Some say I was born with a crooked head, but I like to it's where God kissed me instead" and "They say there is a smile waiting for you on the other side of sadness"...but it was the note from Shelby that said it all...

"Anyone can give up, it's the easiest thing in the world to do.
 But to hold it together when everyone else would understand
 if you fell apart, that's true strength"

Thank you Shelby Davidson and Thank you Cranio Care Bears... I hope someday I can repay the favor.

Cranio Resources

Cranio Angel Network

Cranio Care Bears

Cranio Kids

Cranio at Mayo Clinic

Mayo Clinic in Rochester

The Waiting Game

I feel like a kid in a car...are we there yet? In a week we will be leaving for Rochester to start pre-op workups, like blood-typing and more imaging. We should be getting the call for exact all seems to be hurry up and wait. I do know it will be super early in the morning, they've advised us to come to town the night before.

I keep checking the calender like I check the clock. 9 days...

We have awesome support. Not only have our friends and family been supportive, but support groups have reached out to us as well as some amazing individuals who have been though this all before. I hope to someday have the strength they do.

Right now I am a piles of nerves, it feels like my heart is in my throat. I think I am doing great, then I breakdown out of nowhere. I was at Kohl's looking for some 12month zip-up/snap-up outfits for Casey and I could find every size BUT 12 month. Do manufactures think babies stop needing those once they magically hit that size?! Anyway, I just stood there and started to cry. I know it was something so trivial, but something I really wanted to do that I knew could make Casey's life easier. I ended up finding one pair and later found a Florida Gator's Mascot outfit on clearance...well I had to buy it!

Look, his first Popsicle! :D

Ok, well I am off...trying to get everything in order before I lose my mind. The upside to this all is I have been in touch with a very nice woman whose son has had this surgery 2 years ago and all her advice and information sounds so promising. It helps to know there is such hope and promise and like I discussed with my friend, we are so lucky, it could be worse!

Wednesday, June 22, 2011

Scaphocephaly (Saggital) Craniosynostosis - The Techincal Side

Our world has been rocked. One day I am taking Casey in for a doctor appointment regarding his back and before I knew it I was leaving with a referral to a pediatric neurosurgeon. We were sent to Mayo Clinic is Rochester yesterday to meet with a team of doctors to determine if his plates in his head have prematurely fused. As my friend Nicole said, Casey does everything a head of time (including being born) so why would this be any different? We were joking about that on the way to Rochester and telling Casey what a long trip we were going on to be told everything was just fine. Well, it wasn't...

Once we found our building (one of the many Mayo buildings in Rochester), got our car parked and got Casey up to Dr. Clay's office it was less than a minute until he was diagnosed. The doctor walked in the room, looked at Casey and said "Oh here's our Saggital Baby...yup! Any questions about surgery?". Needless to say we were dumbfounded and the doctor mentioned we looked like deer in headlights. Of course we had questions.

What is Saggital Craniosynostosis?
Mayo Clinic's website says "Craniosynostosis is a condition present at birth (congenital) in which one or more of the joints between the bones of your child's skull (sutures) close prematurely, before your child's brain is fully formed. As a result, your child's brain's growth is inhibited and your child's head develops into an abnormal shape" Casey's Saggital plates are the ones that have fused, which makes his head long and narrow as his brain attempts to grow out the back.


How did this happen?
They have no idea, but it happens in 1 in 10,000 babies.

Will this one surgery cure him?
Maybe, he will have many appointments during the next couple years.

Is this genetic?
They are not sure, but Casey will be participating in a study.

Will he need Helmet Therapy?
No, they will use a plate to fuse his skull along with some screws, so no helmet will be needed.

What procedure will be used for the surgery?
The Pi Procedure.


This is the scar it will seen on a baby from They zig-zag it to help the hair grow back in a more natural state.

What will the surgery be like?
Mayo Clinic is doing Casey's surgery and their website states:
"The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often performs the surgery.
  • Traditional surgery. The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, may take up to seven hours.
  • After surgery, your infant remains in the hospital for at least three days. Some temporary facial swelling is common after surgery. Complications are rare. Some children may require a second surgery later because the synostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces.
We have also been told Casey will be brought down 2 days before the surgery for more imaging and blood-typing. With this surgery he will need a full blood transfusion. We were also informed that Casey will be spending a night or two in the ICU. He will be bandaged like a little mummy, his eyes swollen shut for 24-72 hours.

I know I have more questions, not that I can think of them right now. I can't think at all. I feel numb. I do know that Casey is a little fighter. I will keep you updated on our journey through this...keep us in your thoughts, please!

Our trip to Italy...

I know Cranio is not the same as a "disability" but this poem perfectly describes how I feel today.

"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 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...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 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."

© 1987, by Emily Perl Kingsley. All rights reserved.