Who will be the lucky ones?

Yesterday was Owen's follow-up appointment from his eye surgery on May 3rd. His right eye has been great since surgery but I've noticed his left eye rolling up when he'd turn to look at something, etc.

The Doctor examined him and said his right eye looks great and surgery did what it was supposed to, but he has what is called masked bi-lateral cranial nerve palsy. Basically we had no way of knowing how bad the left eye was until the more severe eye was fixed first.

So, we'll be doing surgery on the left eye some time in the next 2-3 months. By the time he's two years old he'll have undergone three different surgeries with possibly one more on his skull around his third birthday. He probably doesn't need another major surgery like his one last year but his plastic surgeon has mentioned doing a revision and shaving down any "lumps and bumps" from his first skull surgery. On the right side of his forehead it looks like he has a knot there, almost like he hit his head on the table and has a goose egg there. It's been that way since his surgery a year ago. I am pretty sure that will be shaved and smoothed down to make his forehead look nicer. I have apprehensions about doing a "cosmetic" procedure, but he'll be close to school age then and I don't want him going to school and being teased or asked why he has a knot on his head all the time. His hair does a good job of covering it. Maybe I just notice it more and pay attention to it because I know it's there. I've met a lot of people who have told me they didn't even look at him and suspect he's had something so serious done until after I said something about it.

A year ago on May 27th was the first anniversary of his surgery to correct the right coronal craniosynostosis he was born with.  It's so amazing to remember where we were a year ago and to think of where we are now. He is 21 months old now and definitely in the beginning stages of the "terrible two's." He's talking so much more now and he's just an all around amazing kid. He got his first big boy hair cut a few weeks ago. The girl who cut his hair did an excellent job trimming it down and not showing too much of his scar. His scar goes from ear to ear. His plastic surgeon did a beautiful job on it and you can barely see it but I don't think he'll ever be able to have a short cut. 

The last few weeks have been so crazy busy, so I apologize for not updating sooner. I am hoping we'll have a date soon and we can get this one behind us and maybe, just maybe.... I can breathe.

Round 2

What an emotionally exhausting week this has been! I do not recommend scheduling your child for surgery the same week you're having to re-live the hardest day of your life. Owen's eye surgery was Thursday and Audrey's 3rd birthday is today. There will never be enough words to express how much I miss her. We went to the cemetery today to plant flowers. It was a gorgeous day for us to do it and we always talked about planting flowers and putting up a hanging basket, so we finally did it. Looks gorgeous up there!

I was super stressed all week about Owen's eye surgery, adding to it the stress of him getting sick with a cold the week before. I was a nervous wreck in general and then I was even more nervous that we'd end up having to post-pone surgery because of his cold. The surgery wasn't something that needed done immediately like the surgery for his craniosynostosis, but when it had been hanging over our heads since January that it needed done, I was ready to get it over with.

We woke up early Thursday morning and got ready for the hospital. Talk about de ja vu! Didn't we just do that a year ago?! Owen was not happy about not being allowed to eat or drink his milk. He was allowed water or gatorade until 7:15 am, but he's a creature of habit... and he LOVES his morning cup of milk.

We got to the hospital, checked in and the nurse came in to exam him. She mentioned his cold but said she didn't think it would stop surgery. The nurse practitioner then came in and said she noticed it too but he wasn't wheezing so she was okay with clearing him for surgery. I was so relieved! After listening to little guy have a melt down over being tired and hungry for what felt like an eternity, they finally came back to take him for surgery. 

The Doctor told us in February the procedure would be 45 minutes to an hour, so I went down to the cafeteria to get something to eat. Neither of us felt right eating when Owen couldn't, so we waited until after he went back to surgery to eat. I had just sat down and took the first bite of my sandwich and the Doctor was already coming out. It was maybe 20 minutes and he was done. I was shocked. I honestly started to panic when I saw him because I thought he was coming out to say he had a reaction to being put under, they had to stop surgery, etc... but nope, he was done and Owen was going to recovery.

He started to wake up shortly after we went to recovery but I picked him up and cuddled him and he went right back to sleep. After recovery phase I, we had to go to recovery phase II for a little bit. Around Noon-ish he had started to wake up and they came in to remove his IV's, give us discharge instructions, etc. I was standing at the crib with him, dressing him, when I looked down and noticed blood on his arm. He was crying a little bit and when I looked up, there was blood coming out of his eye! Oh, I lost it. The room turned white, it was like I was looking in a tunnel and I couldn't hear anything. I remember telling Adam to get the Nurse and come grab Owen. I was going to pass out. I sat down, the Nurse came in and said everything was okay... that was to be expected from the procedure.. but he was okay. It would have been nice to get some kind of warning beforehand! It's not normal to see blood coming from your child's eye. I took a drink of some juice, the Nurse made sure I was okay, and then we were free to leave. Adam told me when we got to the car that when I asked him to grab Owen and get the Nurse that all of the color left my face and I looked as white as a ghost. It had to have been because of where the blood was coming from, because I've never reacted that way to blood before. I didn't react that way when he had his cranio surgery last year. It was so bizarre! I guess if you're going to pass out (or come close to it at least) there's no better place to do it than at a hospital.

He was pretty groggy and inconsolable in the evening. I ended up giving him some of his pain medicine and he passed out on the floor. It was kind of cute actually. He was sitting by the door playing with his hot wheels and I noticed he was quiet. I got up to check on him and he was passed out in the front of the door, butt in the air and his hot wheels still in his hand.

By Friday morning he was back to his normal self and Adam said he even ate 3 whole hot cakes from McDonald's and probably would have ate more if there was more to eat. :)

We have some cream that we are supposed to rub on his eye twice a day. He's not a fan of it, and pretty much screams like I am hurting him each time, but it has to be done. We go back Monday for a follow-up with the surgeon.

I was sitting on the couch with him last night, watching him as he watched cartoons, and I was stunned. For the first time in his short 19 months of life he wasn't tilting his head to watch tv. He was sitting up and actually holding his STRAIGHT. It was incredible! I was in awe and sat there forever just watching him.

It's so amazing to me that we put him thru months of physical therapy for his neck only for this to all be because of his eyes. I love his physical therapist and I appreciate every word of wisdom and encouragement she provided, but it's so frustrating that two Doctors (his pediatrician and the first Eye doctor he saw) couldn't properly diagnose either problem. It took us going to Akron Children's to finally get the answers and treatments. I am so thankful to have such an amazing facility so close to home.

 You should see the other guy. He hasn't got up yet ;)

CT and follow-up appointment

Owen had a follow-up CT scan and appointment with his plastic surgeon, Dr. Murthy, today. I was very surprised to hear his CT was without sedation (even though I preferred it that way) and I was slightly nervous about how he'd do with lying still for the scan, but my little boy did a GREAT job!

After his scan we went upstairs to go over the scan with Dr. Murthy. I love seeing him and hearing how Owen is doing. He walked in the room and greeted us with an enthusiastic and happy "Hello" and I knew by that tone that the scan results were good and everything was okay.

He said everything is looking great. I guess time has flown by faster than he thought because he made a comment about the surgery and said "It's been what, 6 months now?" and I smiled and said "No. Next month will be a year." It's surprising to me too! Owen's plates and screws are starting to absorb and break down like they're supposed to. He said between 10-15 months after surgery is when that really starts to happen and Owen is right in the middle of that. He did mention there are still a few minor defects but all we can do is give things time and see how things heal, etc. He said his right eye socket is still slightly shallow. Along with the cranial vault reconstruction he had a frontal orbital advancement done. He did say with the amount of work Owen had done things are looking very good and he doesn't see any reason why Owen would require another surgery, the chances of a repeat CVR/FOA are very low at this point. He said we'd know more about how things look around age 3. Owen may need a revision surgery with bone putty to smooth things out but that's not an immediate concern at this point.

Dr. Murthy asked me if we had been contacted by the hospital PR department yet because the Akron Children's Hospital Craniofacial Clinic is doing a brochure about the program and they want to feature Owen in the brochure. He said when he was approached about this the first person he thought of was him. I wanted to cry right then and there! It's been my goal since the day Owen was diagnosed to spread awareness about his condition and bring attention to what Craniosynostosis really is. Even if this blog, or the news story or the brochure only ever reached one person - that would be okay with me. That would be one more child that is properly diagnosed and treated. But to have my son be a face to this, it means so much to me. I am truly honored to do this!

We'll go back again to see Dr. Murthy in September right before Owen's second birthday. I cannot believe he will be two in just 5 months! We'll probably go to yearly check-ups after that, if all is still progressing as well as they are now. I think Dr. Murthy was ready to move him to yearly appointments now -  He actually made a comment and said "We'll see ya in a year.... Well, wait, let's have you come back before his 2nd birthday." Maybe he just wants to keep a closer eye on him, or maybe he knows how I am... I'm not sure if that's a good or bad thing. ;) His office and PA have come to know me very well with as many calls I've made and emails I've sent over the months.

Overall, things are progressing very nicely. Right around the same time as Owen's next check-up with Dr. Murthy he has a check-up with the neurosurgeon. This condition is something that will be monitored throughout his childhood.... and that's ok with me. I absolutely love the medical team Akron Children's has in their Craniofacial clinic and I absolutely love the time and attention they give to their patients. I feel very fortunate that we have such an amazing facility so close to home. Thank you doesn't even begin to describe how I feel, but they're all the words I have.

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.