Goodbye 2011

Along with 2009, this has been one of the hardest years of my life. I had no idea when 2011 began what exactly it would have in store for my family, most importantly, what it would have in store for my little boy.

In early January we had an appointment with an ophthalmologist because at Owen's 2 month check-up the pediatrician noticed his eyes were off balance and wanted to get them looked at. The ophthalmologist said his vision was good but diagnosed him with torticollis. He kept his head tilted to the left a lot and he said that was because of a neck muscle issue.

On January 17th Owen began physical therapy to treat the torticollis. We kept taking him back to the pediatrician insisting something was wrong. His head shape wasn't right and when I held him in front of the mirror, his facial features looked distorted. The pediatrician who noticed his eyes was not his regular pediatrician. His regular one seemed to fight us every step of the way when we told him something wasn't right. Owen's right forehead was flat, his forehead kind of sloped actually - very prominent on the left and got smaller and flatter as it got closer to the right side. We took him back and forth to physical therapy once a week and back and forth to the Doctor, still concerned with his head shape.

Finally by April we couldn't take it anymore and we demanded a second opinion. On April 20th we met with Dr. Roger Hudgins out of Akron Children's and Owen was diagnosed with right coronal craniosynostosis. His CT Scan on May 4th confirmed it and we met with his plastic surgeon, Dr. Ananth Murthy, the following day to review the images. It was just 22 days later on May 27th when Owen had his surgery to correct his condition.

That event took my whole world, rocked it and shattered it and slowly we have pieced everything back together. Owen is now a happy and healthy 15 month old boy and he is an absolute blessing to our family. He completes the picture. He's so happy - all the time. I get comments from people everywhere we go about how happy and content he is. He's always been that way and even after a major skull surgery he was still so happy. Craniosynostosis has done a lot of things to my little boy but it never took away his sweet smile. For that, I am forever thankful. 

I am forever thankful for the amazing people who came into my life as a result of this condition. First off, his surgeons. What they were able to do to help my little boy there are no words that can express my gratitude. They're true miracle workers. I've also been blessed to become friends with many Mom's (and Dad's too!) through various organizations and Facebook groups. CAPPS, Cranio Care Bears, Cranio Angel Network, The Jorge Posada Foundation, Ava's Elephants. I am so thankful for each and every one of them. They cheered my little boy on through his surgery and have been there as a rock of support through his recovery. I am so thankful for the love and support of my family and friends. I am thankful for my Dad, my Step-Mom Lisa, my Father-in-Law and my Grandma who came to the hospital to see Owen before his surgery and who sat with us during the hardest 4 hours of our lives. There are no words to express what that meant to my Husband and I.

I wish I could say I was sad to see 2011 go, but I'm not. I'm so relieved and ready to say Goodbye! I look forward to what 2012 has to offer. I look forward to watching my babies grow and play. I just look forward to finally being happy and putting the negativity in my life behind me. 

I look forward to 2012 with hope. Hope that we can finally heal from the last 2.5 years of our lives and hope that the worst is behind us. 

Cranio Kid of the Month

Wow - what an honor! My sweet Owen was selected as the CAPPS/Jorge Posada Foundation Cranio Kid of the Month for December!

I have spent every day since his diagnosis wanting to help raise awareness and help educate other parents about craniosynostosis. My Husband and I spent so many months wondering what we were dealing with and feeling brushed off by Owen's first pediatrician. He insisted it was positional plagiocephaly and nothing more. He made me feel like I was crazy and that I was obsessing over nothing, but I knew in my heart that I wasn't obsessing over nothing. I knew something was wrong. I think as a medical professional he should have sent us for a 2nd opinion just to make sure everything was okay instead of making us demand one like we had to. Positional plagiocephaly and craniosynostosis can be very similar but there are also huge differences. Owen showed every sign of craniosynostosis but yet his pediatrician never took it seriously enough.

I am a firm believer that there is no instinct stronger than a Mother's intuition. I knew without a doubt in my mind that something was wrong. Did I want to believe there was something wrong? No, of course not. Of course I wanted to trust what his Doctor told me was true, but my heart told me otherwise.

To have my sweet Owen selected as the Cranio Kid of the Month after the struggles he's had during this year, it's a huge honor. We are so proud of the obstacles our little boy has tackled. He is a true hero. He's not even 15 months old yet and he's already faced so much! Thank you to those who selected my boy for this honor. We are so blessed to be a part of such an amazing and support community. From day one the Cranio community has been like family to us.

Check out www.cappskids.org and you can also purchase their 2012 calendar. Owen and I are featured on the page with pictures of cranio kids and their parents and Owen is also featured on a page in his Steelers jersey.

6 months post-op! Can't believe it!

My little boy and his precious smile. <3

a side view of his head - I swear it changes on a daily basis.