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.

First of many....

My Dear Owen,

I don't think there will ever be any words to express to you how much I love you. The day you were born, it felt like my world made sense again. The moment our eyes met, I knew you were sent to heal my broken heart.  I remember holding you for the first time and studying your face, your eyes and your tiny little hands and I knew in that second that you and I would have a very special bond.

I cannot believe we are just days away from your very first birthday. This year has been so hard on our family but the bright spot in all of that was you. Everything you've endured in your first year of life is more than anyone should ever have to in their entire life. You are strength personified. I am so proud to be your Mother!
Some day I will sit down to tell you the story of your first year and everything you've been through.

Some day I will have to tell you about the tough road you had and the Doctor's we had to see, the tests you had to have and the worst moment of all of that - your surgery. Those were the hardest moments for Daddy and myself. We love you so much and we never wanted you to have to endure any pain but we also knew you deserved to live the life of any normal boy and the surgery was the only way to do that. We are so proud of you and everything you've overcome. You did it all with a smile.

So many people who have met you over this past year always say the same thing "He's so happy." That's the honest truth. You're always smiling and laughing. You absolutely love your big sister and I swear she is the only one who can get you to do those big belly laughs that we all love so much.

You are the piece that completed our family and we love you so much. This is just the first of many Happy Birthday letters I will write to you. There were some days when I felt like this day was so far away and now here we are. I am so proud of you baby boy and remember one thing, so many people love you but no one will ever love you quite like your Mama does.

xoxo,
Mommy

3 month check-up

Wow, has it already been 3 months (now almost 4) since my little man's surgery?!? I waited anxiously for that day to arrive and now it's just flown by since.

We made the trip to Akron Children's on Wednesday for his check-up with his neurosurgeon, Dr. Hudgins. I always get a little nervous before these appointments. I guess it's that fear that they'll say things aren't progressing like they hoped and he'll require another surgery.

I am very happy to say that was NOT the case and he got a great report from Dr. Hudgins. He is very happy with the progress Owen has made since surgery and said things should continue to smooth out over time. He blew me away when he said he is okay with moving to yearly appointments. I swear he saw the shocked look on my face when he said that. I fully expected we'd go every 3 months for the first year and then after that we'd switch to yearly appointments. I didn't know it would happen this fast!

But... I'm not complaining. Not at all. As much as I love Akron Children's and the amazing staff there, it's been a long and exhausting year. I am relieved and happy to stop making so many visits to the Doctor.

Owen has one more check-up next month with his plastic surgeon. I hope he'll give him another great report and switch him to yearly appointments as well. That would be amazing!

I probably sound like a broken record when I say this, but I'll say it again, I am so beyond proud of my little boy. This surgery hasn't changed him one bit and he hasn't let it slow him down at all. I am so thankful for every day I have with him. He's a very special gift to our family. <3

Craniosynostosis Awareness Month

Every 1 in 2,000 births a baby is born with Craniosynostosis. On September 21st, 2010 at 5:31 pm, my son became that one. In the moment he was born I couldn't have even imagined the road our lives would take over the next several months. 


It became pretty clear, within the first 2 months of this life, that something didn't look right. I kept looking at his forehead, examining his head shape, and wondering why things looked the way they did. I would google everything and when I typed in "slanted forehead shape" one of the first things that popped up was Craniosynostosis. I had never even heard the word the before and I assure you I couldn't even come close to pronouncing it. I clicked on the link and read the signs of it and my heart sank. I knew right there, in that moment, my son had that condition. We took him back and forth to the pediatrician all the time and he kept saying it was just positional flattening and he would be fine. If it wasn't "better" by 9 months, we'd consider helmet therapy. I tried to listen to him and I would tell myself "he's the professional... he knows what he's doing..." but that feeling continued to eat away at me and I knew I couldn't just sit back and wait.


The day the Neurosurgeon picked up Owen and immediately said "right coronal cranio" it was like the air was sucked out of my lungs. I had been bracing myself for months to hear those words and in my heart, I knew that's what it was, but actually hearing those words - there's only one other time I was ever left breathless like that - and that's a moment in my life I wouldn't wish upon anyone.


In the days and weeks leading up to Owen's surgery I constantly kissed his sweet head and I would cry. I cried all the time. He was perfect to me, Craniosynostosis or not, I loved him no matter what. I knew the surgery was critical to his well-being and it needed to be done to ensure he would grow normally and live the life he was supposed to. But every time I kissed his sweet head, I prayed to take this condition away from him. Give it to me. Make ME have the surgery. Not him. I would've done anything in the world to fix this for him without him having to endure one ounce of pain.

I love all of my kids the same but each of them also hold a very special place in my heart. There are no words to describe the love I have for my kids. Owen is my hero. What he has gone through in his short life, he has done with a smile. Everyone I encountered in the time before his surgery would tell me how resilient kids are and how fast he would bounce back. I thought they were just being polite, saying comforting things to a person who they could tell was clearly a wreck.


They weren't lying.

That little boy kicked some serious Craniosynostosis butt. 


I am not happy my son has this condition and I'll spend forever wondering "Why him?" Didn't God know I had already been through enough with the stillbirth of my daughter just two years ago? But one thing I will say is, while I am not happy, I am PROUD. 


I ask you, or anyone else who comes across this blog, to take the time this month to spread the word about Craniosynostosis and early detection. If undiagnosed - my son would have eventually lost his hearing, maybe his vision and he definitely would have had developmental delays due to pressure on his skull. 


My son is a warrior and he doesn't even know it yet. Some day I'll share his story with him and I will tell him how he showed more bravery and courage than anyone I've ever met.


He is my hero.

I am so thankful Craniosynostosis can never take away that precious smile.