We have a date!

Eye surgery is scheduled for May 3rd.

If I could wipe May off the calendar - I would.

May 5th, 2009 we lost Audrey forever.

May 2010 - I was pregnant with Owen. The one joyful thing in my life at the time.

May 27th, 2011 - Owen had a major 4 hour cranial vault reconstruction and frontal orbital advancement at Akron Children's Hospital.

May 3rd, 2012  - Eye surgery

When is it going to end?!? 

I tell myself every time I get down that I am doing this and fighting so hard for him because losing Audrey was a battle I couldn't win, there was NOTHING I could do to bring her back. From the second I was lying on that table and heard that there was no fetal heart activity.... I couldn't change it.

When we heard Owen was born with coronal craniosynostosis, while it was devastating and crushing, I knew I would do everything in my power and fight with every fiber of my being to do whatever is needed to fix this. I love him no matter what but I also love him so much that I want the absolute best for him and his development.

Being back in that waiting room will be like de ja vu... like reversing time and going back to that waiting room one year ago... but I know this is what needs to be done and I know my little boy will rock this surgery too! 

I am so damn proud to be his Mother!

Common misunderstanding

I remember when I was first new to the world of craniosynostosis... back before I even knew what it was that my son had... I'd spend hours upon hours reading online and I was hoping in my heart that we'd hear he had positional plagiocephaly that could be corrected with a few months of helmet therapy, but each and every time I logged onto a website and read what craniosynostosis was, specifically right coronal, I knew in my heart that was what Owen had.

The day the neurosurgeon diagnosed it and the day the CT scan confirmed it were hard but it wasn't a surprise. I knew.

Recently I read an article about a little boy in California also diagnosed with craniosynostosis and now going through helmet therapy to finish re-shaping his head. Owen never went through helmet therapy after surgery and still has some flattening related to the craniosynostosis but his plastic surgeon said that most cases will round about by age 3 and he never recommended one for Owen before or after surgery.

The article about the little boy stated "About 90% of the reason for doing the surgery is cosmetic. Without the treatment, a child will have a skull that is oval or egg shaped, or what is known as "toaster head." Before the 1970s, children had to live with the condition."

Read more here: http://www.fresnobee.com/2012/03/05/2747867/helmet-allows-young-daelin-edwards.html#storylink=cpy

I can speak from experience... IT IS NOT COSMETIC!

That is a very common misunderstanding. It irritates me and makes me mad!

Yes, my son was physically changed due to the surgery but I didn't just wake up one day and decide I didn't like my son's flattened forehead and wanted to do something about it. Positional plagiocephaly can be corrected with a helmet - craniosynostosis cannot. Surgical intervention is the ONLY way to fix it. 

My son's brain was not growing properly due to the fusion of the right coronal suture. The fused suture was forcing his brain to grow toward the open sutures. Yes, it was changing his facial features but the procedure he had done was not to fix those. The procedure he had done was to re-open the suture to allow his brain to grow properly in ALL directions. The procedure he had done would prevent pressure on his brain, vision and hearing loss. Owen does has vision issues related to the craniosynostosis but without the surgery, it could've been so much worse. 

Craniosynostosis has not only changed my son's life but it has changed mine. I am a huge advocate for my son and his medical care and it has become a huge passion of mine to educate other people, new families, etc. I want everyone to know and understand what craniosynostosis is and how serious it is. There is nothing cosmetic about this procedure!

My handsome boy - 18 months old on the 21st. 10 months post-op on the 27th. We've been on "the other side" for almost a year now and it feels so good!

Here we go again...

Owen had his vision check-up from his initial appointment 6 weeks ago. We've been patching his eye for an hour a day since January 9th, when we found out he has a weakened eye muscle and may require surgery to correct it. It's quite common for cranio kids, especially coronal ones like him, to experience eye issues. So I wasn't at all surprised when the Doctor mentioned the possibility of surgery.

Today he confirmed it. We'll be doing surgery some time soon - probably within the next month or so. He doesn't think the patching will have the full affect it needs to and surgery is the best way to correct this. The sooner we do it, the better chance we have of not doing any further damage to Owen's vision. There's a possibility he may need another one down the road, but we'll cross that bridge when we get there.

I'm surprisingly okay with this decision. It's nothing like the cranial vault reconstruction he had done last May. This is a more "simple" procedure and we'll go home the same day. I was absolutely thrilled to hear that and even more happy to hear the surgery takes maybe an hour to do. I am so thankful we won't have to sit on pins and needles for 4 hours in the hospital waiting room like we did last year. That was the hardest thing to do!

If you're new to my blog and you have any worries, fears, concerns about your child - my BIGGEST piece of advice is it's better to be safe than sorry. I am a huge advocate for early detection of this condition and for the proper treatment. I think every cranio baby, especially coronal, should have thorough vision check-ups. It's what is going to help fix my son's vision issues.

17 months old tomorrow! It's flying by. I call him my sweet boy. I don't just say that because I'm his Mother. It really is true! ;)

Have a Heart, Do Your Part

WOW. What a week it has been! 

Wednesday kicked off the Have a Heart, Do Your Part Radiothon. I was collecting change and donations online since early January and this past Wednesday the kids and I made the trip to Cuyahoga Falls and went to the Change Bandit Bash. We had a fantastic time! They had a raffle and I even ended up winning a $25 gift card to a Mexican restaurant in Akron. Adam and I plan to go out on a date night soon and use that. I'm very excited. 

The Change Bandit Bash was a big success and kicked off Radiothon with over $56,000 in donations. Yesterday an amazing donor came forward and agreed to double every single donation made and they ended the day with over $475,000. That same amazing donor is doing the same thing today. I am amazed!!!

It feels so good to be involved in this and to give back to the hospital and staff who gave so much to our family. The day Owen was diagnosed and I sat in Dr. Hudgins office and cried, he did and said everything he could to comfort Adam and I. Meeting Dr. Murthy two weeks later and seeing how amazing and comforting his staff was, it made the decision to do the surgery that much easier. 

You never think you'll need a Children's Hospital and specialists for your child. I know I never believed we would. Then the day came that we did need Akron Children's.... and they did everything right to help our son.

I still remember the anesthesiologist looking at Adam and I and telling us "I have two boys of my own and I treat each of my patients like they are my own." I was doing ok handling my emotions that morning and when he said that, I lost it. The tears just flowed and flowed after that. There isn't a price you can put on that kind of care, but this was a fantastic way to start.

Today is the last day of Radiothon and you can still make a donation through www.wkdd.com or by calling 866-543-0981.

Pirate boy

Well, I figured since it's been almost a month since my last update on Mr. O I'd stop by and fill everyone in on his progress.

He is 8 months post-op tomorrow!!! He is doing incredible. He turned 16 months old on the 21st and he's growing like a weed. My husband commented at dinner one night, as he's shoving a fistful of food in his mouth, that it feels like he was just that tiny baby who was getting round-the-clock bottles and now he's feeding himself and getting bigger by the minute.

Owen had a check-up with his ophthalmologist on the 9th. I had a feeling we'd hear something concerning his vision. He was treated for torticollis from last January through August 2011. I know part of his issues may have been head/neck related but I kind of always felt it was vision related too.When he had surgery to correct the craniosynostosis he had to have repair work done to his right eye socket. The ophthalmologist said he has a weakened muscle which has caused a slight lazy eye and in turn causes him to tilt his head to see better. We will go back in 6 weeks to check his vision again but in the mean time we have started patching his eye good eye to force him to use the weaker eye. Hopefully that will help, if not, we're looking at surgery to repair the muscle. The Doctor saw the look of terror on my face and did an excellent job of saying all the right things to help ease my fears. He said the surgery, if needed, is outpatient and Owen would go home the same day. He also said the surgery would fix the head tilt right away. I am praying the patching does what it needs to but we are fully prepared to commit to another surgery if we have to. I'd go to the ends of the Earth and back again for my kids and I'd do anything to fix this for him.

Patching has been touch and go. Some days it seems like he tolerates it well and other days it seems like it takes every ounce of energy not to lose my mind because of how frustrated he is, how many times he rips the patch off, etc. It breaks my heart, but I know it's all for his well being.

I am SO proud of that little boy and SO proud to be his Mother. He is my hero. <3

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.