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.

Beyond Thankful

I could say all of the things I am thankful for, I have a list probably a mile long, but my biggest things to give thanks for this year is the health of my children.

My biggest fear(s) in life are something happening to me and leaving my kids without a Mother, losing my husband and losing my kids. The idea of those three things terrifies the hell out of me.

We were faced with the very real possibility of losing another child when Owen had his surgery this year. This surgery was a major, 4 hour surgery to reconstruct his skull and reshape his eye bones due to right coronal craniosynostosis.

The moment the OR Nurse came to take him from us, it felt like my heart stopped beating. It didn't start again until the moment his plastic surgeon walked up to us in the operating room with a smile a mile wide on his face.

2011 has been a tremendously tough year for our family but the bright spot in all of that is Owen. He is always such a happy baby, always smiling and always so content.

I often wondered if surgery would change his personality at all, Thank God it didn't. He's still the same loveable and sweet little boy he's always been.

The other day I read the new US Weekly article about Tori Spelling's new baby. She made a comment about her head and saying it was the most beautifully round head she's ever seen. I never would have paid much attention to that before, but now, as a Cranio Mom, that comment stung a little. To me, my son is perfect and he was perfect to me before the surgery, but it breaks my heart when I think of everything he had to endure just to grow like a normal little boy. Life isn't fair and to make a sweet and innocent baby go thru what he did, it's just not fair.

I'm so thankful we're on the other side now and we can put this year behind us and finally enjoy watching our little boy grow. We're coming up on 6 months post-op soon. 6 whole months! He'll be 14 months old pretty soon and he's growing like a weed. It's sad to know he's my last baby but then I am relieved he is my last baby. If that makes sense....

Craniosynostosis has thrown a lot of curves our way and it has done things that forever changed my little boy's life and he doesn't even know it yet.... that's pretty powerful. I pray for the wisdom and the right words to come to me when the day comes that I have to explain to him why he has a scar that runs from ear to ear and when he wants to see the pictures.... but one thing I will always reaffirm to him is that whether he was born with craniosynostosis or not, I love him no matter what and I am forever blessed to be his Mommy.

oh I've loved you from the start
in every single way
and more each passing day
you are brighter than the stars
believe me when i say
it's not about your scars
it's all about your heart

I will stand by you...

Wow, was it really just 5 months ago that we were preparing for surgery and praying that surgery would be done soon and we could begin the healing process?

It's incredible how the time before surgery seemed to crawl. I spent every day just praying it would come already and we could get it over with and move forward with our lives. When you have something so huge, like your child's impending surgery just hanging over your head, it's a nightmare.

We had Owen's 1 year birthday pictures done a few weekends ago. His head tilt seems to come and go. It's been perfect the last few days but the day of pictures he was really tired and he definitely seems to do the tilt more when he is tired. I worry constantly about it and I wonder if we shouldn't have stopped therapy, but I know we had done everything there that we could and we can continue his exercises at home. I truly believe his tilt is related to a habit, something he's just used to doing, than an issue. Only time will tell, I guess.

Last Thursday he had a check-up with his plastic surgeon. Dr. Murthy is an incredible person and everyone in his office is amazing. I cannot say enough wonderful things about them. How do you thank the man who gave your son the normal life he should've been born with? He's a special person in our heart. Dr. Murthy smiled from ear to ear the entire time he examined Owen. He kept saying how amazing he looked and how incredible it is to know he just had surgery 5 months ago. Owen will go back in 6 months and he'll have a follow-up CT, just to check on the sutures and to make sure everything is healing correctly from surgery. I believe, if I understood the Doctor correctly, we'll go to yearly appointments after that.

As you can see, Owen is a very busy little boy. 13 months old now and growing like a weed. I swear he changes in little (and big) ways every day. He's trying to say new words. His favorite word is "Hi" and he says mama, dada, bear, ball and duck. He's walking so much better now. We even tried his first pair of shoes on him. He was a little unsure of them, but he's doing better with walking in them.

He's dressing as a monkey for Halloween. I am so excited to finally take him out this year. Last year he was barely 6 weeks old and he had already had his first flare up with asthma so we decided not to risk it and we kept him home. We're already at the end of October and so far, so good as far as his asthma. I am praying this year will be a better year now that we know what we're dealing with and we have medicine to help control it.

Being his Mother is my ultimate joy in my life. Handing him over to the surgeon's was one of the hardest moments in my life, but I knew I was doing it for him. He doesn't know it now, but I pray he will some day.

I don't know what the future holds and I don't know what this condition may or may not do to him in the future, but I do know he's here now, alive and well, and each day with him is a gift.

I love you so much, little man. <3

Craniosynostosis has a voice!

We made the voice of Craniosynostosis heard tonight! I am so proud of this news story and I am so thankful for the Fox 8 news team who did this story about my brave little boy. Grateful, blessed, joyful.... those words can't even scratch the surface of how it feels to see this pieced together. My boy is a natural in front of the camera, don't ya think? :)



I have laid my child in a surgeons arms. I have slept upright in a hospital chair. I have listened to the beeping of machines & been thankful. I have smiled through the tears, I have prayed & found strength when there wasn't any left. A mother's love is the fuel that enables a normal human being to do the impossible ♥ For my sweet Owen Hunter. Every time you smile at me I am so thankful that you never lost that sweet smile.

1 year well visit

Owen is a healthy 26 lbs and 30 inches tall. He's in the 90th percentile for weight and the 50th for height. He'll be average height but built like a brick, apparently. =)

He had to get 5 shots. Poor guy! He got the 1st of the flu vaccines and has to go back in a month to get the 2nd set. After that he can just get one a year.

His pediatrician is very pleased with his head and said his surgeons did an excellent job. She went over a list of things he should be doing at his age - he can bang blocks together, he can say a few words (mama, dada, hi, bear and ball are his favorites) and he can walk, etc. He's on track developmentally. He's perfect.

You never know just how precious these milestones are until you're faced with the reality that they could've been robbed from him.

But, my boy beat Craniosynostosis and he left it in the dust. I'm so proud of him!

The reporter from Fox 8 emailed me to ask for some pictures to use with the story. We're planning on an air date of Tuesday 10/11 during the 5pm broadcast and again on 10/12 with the 9 am broadcast. I can't wait to see it pieced together and see how it turned out. I fully expect to cry when I watch it.

My whole purpose in doing this story is the hope that a parent whose child may have this condition can see it and get some answers. I hated the feeling of being helpless for all of the months we were waiting and unsure of what we were dealing with. I would hate for another family to experience that.

One of the organizations I follow on Twitter asked "Do you believe in Mother's intuition?" I replied back - ABSOLUTELY! I knew in my heart for months that something wasn't right. I tried my hardest to believe my son's Doctor knew what he was talking about, but my heart told me otherwise. We finally pushed for a referral to the Neurosurgeon and that's when we began our journey with Craniosynostosis.

A Mother's intuition and a Mother's love are some of the strongest forces in this world.

It's finally here!

I took that picture this morning. My little man fell asleep in his exersaucer for his morning nap. The cuteness of that moment couldn't be passed up, so the camera came out and I started snapping away.

I look at that picture and I see the preciousness of him sleeping in such a funny position and it melts my heart, but then I also look so closely at his head and I see that zig zag scar across his head and it shatters my heart.

Owen turned one year old on September 21st. A whole year old! Every first birthday is special and a momentous occasion but to me, it means so much more. Two years ago the world around me fell apart when our daughter was stillborn. I spent so much time grieving for her and hating the world, cursing the world and wondering what I did to deserve this pain. I remember so often thinking that we'd never celebrate a first birthday again.

Then came Owen.

The day I found out I was pregnant with him was a total shock. My cycle had been whacky for a few months and I had been to my Doctor the month before and told I wasn't pregnant and if my period didn't arrive in another month we'd look into other testing to see what was going on. The next month I went back and BAM - A positive pregnancy test. I saw the little bean on the monitor and the heart just beating away. I remember calling my Dad on the way home from the office and I was sobbing. Tears of joy, tears of overwhelming fear, you name it - I was crying for that reason and more.

I read on a baby name site that the meaning of the name Owen is "young warrior." I actually picked that name to be Audrey's name if she was a boy. I told myself if I ever got pregnant again and we had a son that was his name and I never changed my mind. I had no idea when I chose that name and finally had my son what that name would mean to us and most importantly, what it would mean to him.

He truly is a young warrior. He is strength personified and he's only 1 year old. I look at his scar every day and it is a daily reminder of everything he's had to endure in his short life so far. That scar breaks my heart every single time but it also makes me so proud to be a Cranio Mom. I remember so many times before his surgery holding him and rocking him to sleep and I would kiss his head and touch it. I looked at him and I just couldn't wrap my mind around the idea of there being something wrong. I knew in my heart something wasn't right but I kept telling myself this was all a dream. Craniosynostosis or not, he's my son and he's perfect. I would rub and touch his beautiful head and it broke my heart to know what he'd have to go through just to develop normally and live the life of a normal little boy.

We are celebrating his first birthday party at 2pm today. This isn't just the celebration of him turning 1 year old - this is a celebration of him surviving his surgery and finally reaching a milestone that I wasn't sure I'd ever see again.

Thank you to everyone who has been down this path with us and supported us and our young warrior. We couldn't have done it without you.