Tiegan Twedt | CaringBridge
Studly 2 year post op

Tiegan Twedt TEAM TIEGAN

Latest post: 12/16/2015
Welcome to my website! I created it to give you the latest & greatest about me, a Cranio Kid.

Visit often to read my latest journal entries, see my newest pictures, or write me a note in my guestbook.

With much love, Tiegan John



Yep. I'm a "Cranio Kid"!

When I was born, I looked a little different. The Dr said it was because I "came down" so fast and my pointy forehead & slanted eyes would resolve over time.

At my 2 week check up Dr. Clark suspected I had something called "Trigonocephaly". And so began my journey...

At 4 weeks I had my 1st visit to Seattle Children's Hospital, with Dr. Hing, my Craniofacial pediatrician. She agreed with Dr. Clark and explained the Trigonocephaly, (pointy forehead) was due to Metopic Craniosynostosis. I thought I just looked cooler than everyone else (built for speed and aerodynamics). 'Turns out these rugged good looks come from my 2 front (Metopic) skull plates fusing together early. My brain wouldn't have enough room to grow and my eye orbits weren't protecting my eyeballs like they should. That was enough for me. There's no way I wouldn't ride dirt bikes with my sisters. I was all in.

My next visit to Children's was when I was about 4 months old. I was brave & didn't need anesthesia during my CT scan. I met my neurosurgeon, Dr. Ellenbogen & my plastic surgeon, Dr. Birgfeld. They said my brain & fluids looked perfect but my brain couldn't grow without fixing my skull. They explained they'd need to widen the tops of my eye orbits for optimal protection.  I got killer pictures of my skull (I'm smiling!) and they assured Dada & Mama that they do a few of these surgeries a week- I'm in good hands!  Later, I had more pictures & all sorts of measurements taken and blood drawn from my arm.  Daddy held me so tight I felt really safe but I didn't like being held down. Now we'd just have to wait until I was 9 months old so my doc's could do their handy work. They said my skull will be stronger than most and Mama should call them with all the incredible things I'd be up to, since it'd be their doing. Mama asked if she should call with the naughty stuff~ 'cause that'd be their doing too. ;o)

Don't worry, I wasn't sick or uncomfortable. I was in God's hands and the arms of my family & friends~ no better place to be, being me!  If you want, you may pray for me, my recovery and mama & daddy's nerves (apparently, they're shot). 

Tuesday, Nov 16, 2010 I endured a 4 1/2 hour skull & eye orbit repair called a cranio vault expansion and a frontal orbital advancement. I spent 1 night in the ICU & the next day I finally got to hold Mama & Dada. Then, I spent 4 nights on the post op floor. By day 3 I wanted to "get down" and play. We "broomed" cars on the window sill & watched the helicopters land. On the 5th day, my surgeon removed the drain tube from under my skin & across my brow that sucked out the excess blood & fluids. That was my "get out of jail free" card. :o) 

Since then I've been recovering smoothly with just a couple of minor speed bumps. I'm hi-jumpin' my milestones just to re-affirm that the deformity of my skull and eyes when I was born, had no negative impact on me! :o)   Love, Tiegy J

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