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.