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.

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.

Someone I love....

has craniosynostosis.

Owen is now 11 weeks post-op. When I say he's doing amazing, even that word doesn't seem like enough. There are no words to describe how grateful we are that he is a happy and healthy little boy and he's thriving.

He's trying to walk now! I can't believe it. He'll be 11 months on the 21st. He can cruise the furniture like a champ and he can crawl up the stairs (with supervision of course..) so fast. He's a very quick kid... and very determined too! I just love him. He wears me out but he makes every day better just by smiling at me.

My son's case of craniosynostosis is considered "sporadic," meaning there is no known reason why he developed it. Often craniosynostosis is associated with a syndrome or caused by a genetic defect. Owen has no other relatives with his condition. He just developed it and we don't know why. I look at him and I'm just so thankful that he's through the worst of it and he can grow to be a happy and healthy normal little boy. My heart breaks at the thought of other families who aren't as fortunate and whose child doesn't just have to battle craniosynostosis but has to battle so many other things too. 

If you can, take a moment and visit to very amazing and generous organizations. Cranio Care Bears and Cranio Angel Network. Both could use your support to spread awareness and to help many other families who will face the long journey with their child's diagnosis and who will become a member of the cranio family. <3

Milestones

 Owen is officially 2 months post-op, actually heading into the 3 month mark. August 27th will officially be 3 months since his surgery. He's turning 11 months old soon and just blowing me away with his growth. Every new milestone is very bittersweet for me - one because of losing his sister 2 years ago and two because, had this condition gone untreated, he may never have reached these milestones.

 I am thankful beyond words for the miracle his surgeons were able to perform on him. There just aren't enough words to express my gratitude. I love each of my children the same but then they also each hold a special place in my heart. My oldest - she made me a Mother. She taught me what unconditional love is. My sweet Audrey, she's my Angel. Plain and simple. She taught me how to pick myself up when I didn't think picking myself up was even an option. Then there is Owen. He's the rainbow at the end of a very dark storm for me. His smile melts my heart and gives me that feeling I never knew I could feel again - happiness.

 Every time I look at his scar, it breaks my heart to see what he had to endure just to grow and be a normal kid like everyone else. No baby should ever have to go through what our cranio babies have had to. When the OR Nurse came to us and had to take him back for surgery, part of me wanted to grab him and run and never look back. To me, he was perfect. I love him no matter what. But my heart knew that he deserved a chance at a better life and if he didn't have the surgery, he wouldn't have that. My love and strength (that I credit to my Angel giving me) allowed me to hand him over to the OR Nurse and just.... trust.

If you come across my blog because your child has been diagnosed with craniosynostosis, I want you to know a few things... One, it's OKAY to be scared. It's okay to cry. Two, babies are so resilient. Your little one will blow you away with how well they recover from this... and most importantly, every new milestone they reach is another confirmation that making the decision to do the surgery is the RIGHT choice.

Today is my 25th birthday and I've spent so much of my time today reflecting on my life and looking at my beautiful children, focusing on the wonderful things that I have been blessed with in my life. <3

8 weeks/10 months

Wow - today is 8 weeks since Owen's surgery! I can't believe just 8 weeks ago we were sitting by his side in the PICU. Today he is now 10 months old (as of yesterday!) and is doing amazing.

I am so thankful for every day I have with my children. We often take life for granted and we often think life is going to be sunshine and happiness, but sometimes it never quite works out the way we expect.

Last week Owen had a check-up with the plastic surgeon. He is very happy with Owen's progress. There is still a slight concern with his left head tilt but we've increased the neck stretches at home. His therapist feels happy enough with his progress and said the next time he goes may be the last time! I couldn't believe it when she said it. Wednesdays for the last 6 months have consisted of me coming home from work, picking up little man and going to therapy. It's become a part of the routine. I'll be glad when the time comes for him to "graduate" from therapy, but I'll be a little sad too. His therapist was a HUGE part of us pushing the issue with his skull further that ultimately lead to his diagnosis of craniosynostosis. The next check-up with the neurosurgeon is September 7th and the plastic surgeon's next check-up will be October 27th.

I'm starting to get into party planning mode. Addison's 5th birthday is next month on the 25th and Owen's first comes the month after on the 21st. What was I thinking having their birthdays so close? I'll barely have recovered from Addison's party and then it will be time for Owen's.

Owen is cruising around the furniture more and more and now has started clapping. He's quite the ham and has the most handsome smile. He can melt my heart with one toothy smile and he knows it too. :)

I have several new friends I've met through the cranio community whose children have had surgery in the recent weeks. It breaks my heart every time a sweet baby has to go into surgery but when the moment comes that I hear they made it out of surgery okay, my heart swells with happiness. Our babies have been given a chance at a normal life and to have the medical technology now to do something about this - it's just amazing.

Absolutely amazing.

5 weeks

Owen is now 5 weeks post-op! It seems like time is flying by. I can't wait until we can look back and say "Wow, it's been 1 year.." etc... May 27th is a day that will forever be etched in my memory. Everyone has days in their life that they can't forget. That will most certainly be one of them.

Little man turned 9 months on the 21st of June. He had his check-up on Monday the 27th. He is a happy and healthy 22 lbs 7 oz and 28 inches long. His pediatrician is very happy with his development and where he is at with his milestones. We're so blessed that even with all of the obstacles he's faced - he's met all of his milestones.

He has a check-up with the plastic surgeon on July 14th. Just to check where his incision is at with the healing process. He's still going to physical therapy once a week. His therapist mentioned that we might be switching to bi-weekly appointments pretty soon. She's very happy with his progress. He still does the left head tilt but it definitely seems to be more of a habit thing than an actual issue. She said she'll see him for a few more weeks on a weekly basis and then we might be switching to the bi-weekly appointments.

We are so happy with the wonderful team of Doctor's that Owen has surrounding him. His new pediatrician is amazing, his plastic and neurosurgeon's are just incredible and his physical therapy... I just adore her. There aren't enough words to say how blessed we feel to have so many people who care about our son and his well being.

 This was 4 weeks post-op at the water park :)

My princes

 My family <3

 5 weeks post-op

 Love his gorgeous blues

Owen Hunter 9 months old

9 months

How is it even possible that this baby:

Became this baby:

He's been through so much in his 9 short months and he's done it all with a smile. Seriously. I am SO proud to be his Mother and to get the honor of watching him grow.

He's 9 months old and he babbles "Dada" and "Mama" (but only says Mama when he cries - stinker) and he is crawling more now than just doing the Army crawl. So far, the kid hasn't met a food he doesn't like. He ate cranberry sauce the other night and LOVED it. He was screaming for more. :) He pulls himself to stand (and I've even caught him standing unassisted for a second or two) and he reaches out for us when we reach for him, but what he does after is funny, he'll grab our arm and tuck it under him like he's saying "You're picking me up. You have no choice."

At the last appointment with the neurosurgeon on the 13th, he was 22.4 lbs, but he has his 9 month well baby visit on the 27th so we'll know how much he weighs for his 9 month age soon.

I couldn't have imagined when he was born everything he'd have to endure at such a young age. I couldn't have imagined in my wildest dreams that my son would be diagnosed with craniosynostosis and require a major skull surgery. I say it all the time and I'll continue to say it until I am blue in the face, I am so blessed. We've had a rough road the last two years and there have been some dark days, but at the end of the day, we're all together and we're alive and happy. That's all that matters.

Friday is 4 weeks post-op and the 27th will be the official 1 month mark. It seems like time stood still the second they took him back to the OR and my heart skipped a beat, and now look, we're past the worst part... and finally on the other side.

http://youtu.be/zaqAQacXhp4

The link is to a video the Children's hospital where Owen had his surgery did about his neurosurgeon. I can't say enough how awesome Dr. Hudgins is. I just can't put it all into words.

More Post-Op visits

Owen had his follow-up visit with his plastic surgeon today.

I can't say enough positive things about his surgeon. My Husband and I praise him every chance we get to everyone we can. He is a truly amazing person.

He saw Owen and said he looks incredible and he is healing very nicely. Things are exactly how they should be for him being 2 1/2 weeks post-op. Friday will make 3 weeks since Owen's surgery.

It feels so good to be on the other side of this condition. Now we can focus on Owen's recovery and what comes next. His surgeon recommended we look into a TOT Collar to help Owen with his left head tilt. He's done that ever since he started to get good head control and he's been in therapy for it since January. We've noticed some improvement over the months and it seemed in the first few days after surgery that it was gone, but it's back. His therapist has commented before that she thinks it may be more out of habit now than an issue. The TOT Collar will basically "train" him on holding his head up straight and not wanting to automatically tilt it to the left. He has his first therapy appointment since surgery on Wednesday so we plan to ask his therapist about it then.

Owen hasn't let this surgery slow him down for a second. He's now babbling "Dada" all the time now. He'll only say "Mama" when he cries. I even caught him standing completely unassisted yesterday. It was only for a split second but he did it. He won't crawl with his hands and knees but he loves his army crawl. That kid can move! I'm so proud of him. I think any sick person in this world should have to spend a day with a child battling an illness, disease or who just had a major surgery. It would definitely help to put things into perspective. They bounce back so fast and they don't waste any time moping or whining about their pain. Owen is a true testament to that. He's incredible!

His next follow-up visit with the plastic surgeon is scheduled for July 14th. He wants to see Owen again to check on his incision and watch how it heals. He has an excellent team of Doctor's and I am confident he is receiving the most amazing care out there. No matter how many trials and tribulations our family has to go through, we will make it through this. We have each other. <3

Post-Op

Owen was supposed to see the plastic surgeon and neurosurgeon both on Wednesday but early that morning the plastic surgeon's office called and rescheduled his appointment for Monday morning. I guess Dr. Murthy is in surgery all day and he was running behind and wouldn't be back in time to see Owen for his appointment.

We did get to see the Neurosurgeon and he said Owen looks fantastic. He is very happy with his progress and said he looks amazing for having just had surgery 2 weeks ago.

Owen doesn't have to go back to see the Neurosurgeon until September 7th - 2 weeks before his 1st birthday. When they scheduled the date I had a "holy crap - he'll be almost 1 by then" moment.

I can't believe it.

I'm so thankful - SO thankful - that Owen made it through his surgery with no complications and I'm so thankful he's doing so well. He'll go back to physical therapy again next Wednesday. His left head tilt seemed to improve for a few days but he's back to doing it again. Not as often as he was, but it's still there. Even the neurosurgeon commented on it at his visit. He said to keep up with the therapy because we don't want him to get in a habit of keeping his head that way and undoing all of the work he just had done.

Akron Children's has been incredible to our family and beyond incredible to our son. I'm so thankful for them.

My little Mister - 2 weeks after surgery. He's like a brand new boy! I still look at him sometimes and I think how different he looks. I'm still getting used to the changes. I loved my son just the way he was before the surgery. I knew in my heart something wasn't right and it was obvious by looking at him that things weren't right... but I didn't care. He's my baby and I loved him regardless of those "imperfections."

Even with everything he's been through, I am so thankful his happy personality never changed. He was always smiling, always laughing. Even when his eyes were so swollen that you couldn't see his eye lashes, he was laughing.

He still loves to play with sissy and try to eat her hair... and his sissy is a huge sport and lets him. =) She's the best big sister EVER. When Owen's eyes were swollen shut, she knew he couldn't see her, so she made funny noises to get him to laugh and smile.

Everyone says they have the best kids, and while that may be true, I have to say I have the best kids. =)

I don't know what the future holds for our family or what may happen with Owen's condition, but I know right here, right now that God performed a miracle when he gave us that little boy and I'll spend the rest of my life being thankful he brought him back to us after his surgery. <3

1 week later

This time one week ago, we were sitting by our son's side in the PICU. He had just gone through a 4 hour surgery to correct his craniosynostosis. His face was so swollen and bruised and we had no idea it was only going to get worse before it even got better. By the time we came home Sunday, his face looked like this:

Seeing his sweet little face like that absolutely tore my heart in two.

Now, just 5 days later, my sweet boy looks so much better.

He is my brave warrior. Everything he went through and everything he endured and he's done it all with a smile on his face. Even when he couldn't see, he'd hear my husband and I talk to him or he'd hear his sister making funny noises and he'd just smile.

Everyone told me before the surgery that I'd be amazed at how fast he'd bounce back and how resilient kids are. For anyone who finds this blog whose child is facing craniosynostosis surgery: It's true. Owen is just 1 week post-op and aside from some minor swelling and bruising, he's back to his old self. His scar is getting better day by day. I've noticed some scabbing so that means it's healing and about to fall off. I'll be so happy when that day comes!

Visit some great links for support:


The Jorge Posada Foundation

Cranio Care Bears

Avery's Angel Network

CCAKids.org


All of these sites have so many helpful links, information and ways to reach out for support. They were a true blessing to my family during one of the hardest times.

My son has craniosynostosis...and he kicked its butt!

"While we try to teach our children all about life, our children teach us what life is all about."
Friday morning, May 27th was Owen's surgery to correct his right coronal craniosynostosis. The surgery almost didn't happen. The morning before surgery Owen woke up with a 102 degree fever and an ear infection in his left ear.

I noticed pulling and tugging on his ear the few days prior but there were no symptoms present of an ear infection. My paranoia got the better of me and we went to Urgent Care Tuesday night. Doc there said his ear was fine. Wednesday he was okay and then bam - Thursday he has an infection and a fever. When I felt how warm he was my heart immediately started to race and I got so upset. As terrified as I was to go through with the surgery, I didn't want to cancel it either.

As soon as the office of his surgeon's opened, I called them and let them know what was going on. They said to get him into the pediatrician immediately and get him started on antibiotics. If the fever broke before morning, surgery would still be a go. I called the pediatrician right away, explained the urgency and we had an appointment for 10 am.

We get to the appointment and his new pediatrician (we switched from the one he had since he was born - we felt he neglected the situation with his craniosynostosis) diagnosed his ear infection, gave us amoxicillin and sent us home. His fever had already gone down a degree all on its own without medicine.

After we stopped at the pharmacy and got his meds filled, we began round-the-clock tylenol and antibiotics. I gave him a cool bath, gave him liquids to keep him hydrated. We were doing anything and everything to get this fever down so surgery wouldn't be canceled.

As of Midnight he hasn't allowed any more formula or meds, so he got his final bottle and doses of meds before surgery. He was allowed to have gatorade or water until 5 am, so we woke up around 4 to start getting ready for the hospital and his temp was perfect, it was actually under the normal range. We got dressed and ready and left for the hospital at 5:20.

Surgery was scheduled for 8 am but we had to arrive 2 hours early to allow for all of the pre-op exams, etc. I kept touching him every minute it felt like just to make sure he wasn't too hot. We were called back shortly after we arrived, we got him changed into a gown and the nurses started examining him. His temp was great, still under the normal range and he was acting excellent. We didn't hide the infection or fever from anyone and the one nurse tried saying anesthesiology would have to clear him and if he had a fever the day before, they might not allow him to get the procedure done.

After we did the pre-op exams we had to go to another room to see a nurse practitioner and go over some more pre-surgery information. My Grandma and Adam's Dad showed up and were able to come back and see him. My Dad and Step-Mom also came up and got to see him before they took him back. He finally fell asleep in Daddy's arms. He was so tired after being up so early. Anesthesiology came by and said they were going to clear him for surgery. The Doctor told us "I have two boys of my own and I take care of each and every one of my patients like they're my own." I lost it when he said that. That was all the confirmation I needed right there and I knew in my heart my little boy would be okay.

We were holding him and rocking him when a Nurse came in and said to give him hugs and kisses because it was time to take him back. That was the hardest thing I ever had to do - When we buried Audrey, I knew she was gone and there was no chance of her coming back. Handing Owen over to the Nurse and not being 100% sure I'd ever see him again, it broke my heart into a million pieces.

After the Nurse took Owen back for surgery my Husband and I had to take a minute in the room to gain our composure before we went to the waiting room. Our family was out there waiting for us and we just wanted to dry our eyes a little before we went out there.

The surgeon's told us that surgery would take 4-5 hours to complete. We went out to the waiting room and I thought the wait was going to be agonizing and long but thanks to the amazing support system we had there with us, time flew by. We talked about old times, told funny stories and I was actually laughing. I couldn't believe it. My son was right down the hallway in the middle of a major head surgery and I was actually smiling and laughing. About 10:20 am or so the Neurosurgeon came out and said things were going very well, Owen was breathing excellently and the Plastic surgeon was starting his cuts and doing his part of the surgery now. He said Owen had another hour and a half to two hours left to go.

Around 12:50 pm the plastic surgeon and his assistant (who I have to say I absolutely adore. She was my go to woman with every question and concern I had during this time) came walking over to us. His assistant had a huge smile on her face and right then and there I knew my boy was okay and my heart could finally relax. I hugged her and thanked her for what she did. They both filled us in on the procedure saying Owen did great and he did require the transfusion like expected and he was now being moved to recovery. They told us it would be another 20 minutes or so before we could see him. The hospital gave us a little pager to hold and said it would go off whenever it was our turn to go see him.

When the pager finally went off, my heart started pounding really hard. I was so excited to see him, but at the same time, I was nervous. I was afraid of what he'd look like. When we got back to recovery and I saw him, it was like this huge weight was lifted off my shoulders. My Husband was very emotional and crying and I was like the exact opposite - I was relieved and happy. Yes, it broke my heart to see my son like that but I was relieved he was ALIVE and he made it through the surgery with no complications. We stayed with him while he was in recovery and then shortly after he was moved to the PICU.

Once we arrived in the PICU our family was able to come in two at a time to see him. My Dad and Step-Mom came back first and as soon as my Dad saw him, he started to cry. I grabbed my Dad and hugged him and told him everything is okay now - the worst part of this is over.

Owen was very groggy and out of it for quite awhile. He was receiving tylenol and motrin and low doses of morphine to help with his pain. When I finally got to hold him, I was just so relieved to have him back in my arms. We did have a little scary moment after he woke up. His mouth was very dry and you could tell he was becoming agitated. We were allowed to give him pedialyte and as the nurse was preparing the bottle, he got really upset and ripped the art line out of his arm. He had a line that was in an artery in his arm and that's where they were drawing blood for his labs from. Obviously when an artery bleeds - that isn't good. Blood was all over his gown, all over me and the floor. The Nurse reacted very quickly though and wrapped his arm right away and everything was fine. I was so nervous to hold him after that. That just really scared me.

We laid him back down for awhile and he slept off and on throughout the night. He woke up whenever the nurses came in to do their checks but overall, he did remarkably well. Saturday was just a day of rest and observation. He was moved out of the PICU and upstairs to the neurosurgery/plastics floor.

By mid evening Saturday he was becoming quite frustrated with his head wrapping and kept pulling at it and crying. My Husband being the amazing Dad he is held Owen and sang to him and that definitely helped to calm him down. I can only imagine how scary it is to wake up with your head feeling 10x larger than your body, being in pain and not being able to see. My Husband is a rock and he made sure his baby boy was as comfortable as possible.

Saturday night Owen was definitely more restless than Friday night. The Nurses would come in to do their vital checks and he'd wake up. Adam and Addison got a room at the Ronald McDonald House and they went there to spend the night while I stayed with Owen. It was like having a newborn all over again with how often he was awake, but that was more than okay. Anything for my baby boy.

This morning we started hearing talk about us going home. I was extremely nervous at the idea of him going home. His head hadn't been unwrapped yet and his eyes were still very swollen. Everyone assured me he would be okay and his eyes would open very soon. His neurosurgeon came by and evaluated him and said by this afternoon we could go home. They took the wrapping off of his head and that was the first time I really had an "Oh my God, what did I let them do to him?" kind of moment. I immediately cried. I'm thankful Adam was holding him when they removed the wrapping because I wanted to throw up.

We waited around a little while longer and then his plastic surgeon came by to see him as well. He assured us just like the neurosurgeon and nurses did that he was okay, his scar looked great and the swelling always gets worse before it gets better. He was also okay with sending us home and he left the room to sign the discharge papers.

We started packing our things and Adam was taking them out to the car and then it was just waiting after that. We got some prescriptions for his pain meds, some cream to put on his head and his care instructions for once we got home. It was like leaving the hospital as a first time Mom with a newborn baby, that's how nervous I was.

I am still amazed that two days after major head surgery we were released from the hospital. I joked with his nurse before we left when she asked if we had any questions, I said "Can we take you home with us?" She was so great - everyone at Akron Children's was amazing. We feel so blessed and fortunate to have such an amazing hospital that is just minutes from our house.

We are so thankful for everyone's love and support. Our little man is a true warrior. He's already smiling, laughing, trying to climb, doing his army crawl. He's basically back to normal. Although, to me, he was always normal. He just needed a little extra work to make him more perfect than he already was. <3

Cranio... what?

That sweet, adorable, amazing little boy is my son Owen Hunter. He was born on September 21st, 2010. The day he was born, it was like the world made sense again.

You see, 16 months before he was born I lost a daughter in my 5th month of my pregnancy. That day it was like the world crashed down around me and nothing in this world made sense or mattered, except for my oldest daughter and husband. They were all that I cared about anymore.

In February 2010 we learned we were expecting baby #3. The day I learned I was pregnant I went in for a regular OB appointment and found out I had a positive pregnancy test. To say I was shocked was an understatement. That pregnancy was very emotionally draining for me. After losing my daughter not even a year before, I was beyond fearful it would happen again.

On September 21st, 2010 that little boy came into this world and the very second our eyes met, it felt like I could finally put the broken pieces of my heart back together. His eyes met mine and we just stared at each other. Most babies come out crying and screaming, not my little man. He let out a little cry but he was so calm, so peaceful. I let out tears of joy as I heard those sweet cries that were robbed from my husband and I just 16 short months before.

I remember when he was born Doctors making a few comments about his one eye drooping a little more than the other one. They said it was probably just from being in the birth canal and would fix itself in time. Before we were discharged the hospital pediatrician said something that never quite settled right with me - she told me to make sure I take Owen to the pediatrician to get his head checked and to make sure the bones were growing like they should. I found it odd because no one ever said that to me when my oldest was born. But, at that time, I felt like none of that mattered - he was alive, perfect, healthy - anything else was not even an issue at that time.

As time went on, and as he started to grow, I noticed a difference in the shape of his head. I noticed a little skull "bump" on the top of his forehead and I noticed the right side of his forehead was flattened and when you looked down at him, it was asymmetrical. My gut told me something wasn't right but I knew babies bones shifted and I told myself it would all fix itself.

By the time his first well baby visit came around at 2 months old, it was still there. The same flattened forehead. I brought it up to the pediatrician who also noticed his eye shape and wanted us to see an eye doctor, and she told me to give it some time and to see how things developed but in a few months we could see a neurosurgeon and find out if anything is wrong.

More time went on and we started to notice a head tilt. Right before Owen turned 4 months old we went to our first appointment with a physical therapist to treat torticollis. I kept bringing the forehead issue up to his pediatrician (the one at his 2 month appointment was not his regular Doc) and all he told us was give it time, do sleep positioning, etc... and Owen's head wound round out more and he would grow hair to cover his flattened forehead. That answer never settled right in my heart, but I decided to give it more time.

Finally at 6 months old, I couldn't take it anymore. At the beginning of April, my husband and I agreed we were going to push for a referral to a specialist. We called and made the appointment - April 20th at 3 pm.

That day I was a nervous wreck. Our pediatrician said it was plagiocephaly, but I'd be been reading online for months about both plagiocephaly and craniosynostosis and my heart, my gut was telling me we'd get the news we were dreading........ our sweet boy has craniosynostosis. I couldn't even pronounce the word but I knew it was what he had. I just knew.

When we took him to the appointment, the Doctor's assistant came in first and said he wasn't a typical "plagio kid" but said she wasn't sure if it was craniosynostosis either. She left the room to get the neurosurgeon and while she was gone, my husband smiled at me thinking we'd hear the news we wanted to hear, a helmet would fix this and he'd be fine in a few months.

Then the neurosurgeon came in the room, he picked up our son and held him for no more than 30 seconds and confirmed our worst fear - right coronal craniosynostosis. He started talking all of this medical talk and saying "Surgery" and "CT scan..." and it was all a huge blur to me.

I held my son on my lap and he was just bouncing away, smiling, cooing, being the amazing little boy he is and all the while, I've got huge tears rolling down my face.

My heart told me all along it was craniosynostosis but I still cried, I was still blown away to actually hear what we were dealing with. We scheduled a CT scan for the following week to get a 100% certain diagnosis and then we could move on to scheduling an appointment with the plastic surgeon and then surgery.

The scan for the next week ended up being re-scheduled. On top of these issues with his skull, Owen is also asthmatic and he caught a nasty case of croup and had a bad attack, so he was unable to be safely sedated. Waiting that week for that appointment was already emotionally draining enough but to then have to wait ANOTHER week, I was going crazy.

On May 4th we went back for our second attempt at his scan and it was successfully done. We had our first appointment with his plastic surgeon the following day, May 5th, which was also my stillborn daughter's second birthday. An already emotionally draining day to start off was intensified by his appointment and finally seeing the images of his scan.

Words can't express what it was like to see that image of his skull. The plastic surgeon confirmed 100% that the right coronal suture is completely fused. We saw the images and he pointed out the other open sutures and then showed us the right suture that is a completely shut part of his skull. It was amazing, heart breaking, etc.

After we left that appointment, we went to the hospital lab to get Owen's blood typed as well as mine and my husband's so we could find out who is his direct match so we could donate blood for his surgery.

That following Monday we got word from the neurosurgeon that we have a surgery date.... May 27th, 2011 at 8:30 am.

We are 8 days away from surgery. This month has been so crazy. Tomorrow is 1 month since his diagnosis and we'll be 1 week away from surgery. It feels like everything has happened so fast. I'm scared beyond words. I've shed so many tears over this.

A mother's love is unconditional. There is no doubt in that. There is nothing any of my kids could do that would ever make me stop loving them. There is no condition, disease, nothing that would ever make me love them less.

I look at Owen and, to me, he looks perfect. I know there is something wrong, but it doesn't change the way I feel about him. He's my son, my beautiful rainbow baby. He's such an amazing baby. I'm not just saying that because I'm his Mom. ;)

At almost 8 months old he army crawls like a champ, he's pulling himself to stand, he has a smile that lights up the world and definitely melts my heart. He gives the sweetest baby kisses, he laughs with his whole body, he loves his sister and thinks she's the funniest kid ever. He's a thumb sucker and any chance he gets, that thumb goes right into his mouth.

He's perfect. He's perfect and he has craniosynostosis.

I have never been more terrified of anything in my life than I have been of having something ever happen to my kids. My kids, all 3 of them, have given me joy beyond words, sadness I never knew could exist, and a healing of my heart that I never imagined I'd ever feel again. I've experienced every parents worst nightmare, I've lost a child and had to bury them. Now I'm facing the second worst thing a parent could face, I'm trusting my son's life in someone else's hands and I'm putting him through a major head surgery at 8 months old.

I created this blog for other families to read to help them feel less alone during a truly emotional and gut wrenching time and also to give our friends and family the chance to follow Owen's journey.

Thank you for reading this.