Update time

Wow! I haven't updated Owen's page since his eye surgery in November 2013. Things have definitely been busy and it's never a dull day in our house.

Since then, things have changed once again.

Owen had a surgery in March 2014 to remove his tonsils and adenoids. They were extremely swollen and practically touched in the middle. Due to them being so enlarged it caused issues with snoring and breathing, so we ultimately made the decision to remove them. The recovery for that was rough, to say the least. I would never wish that on anyone!

The summer was pretty quiet and uneventful, for the most part. We did start going back to the Eye Doctor in May after getting the clearance to not come back for a year. His left eye is stubborn and continues to not fully function with the right eye like it needs to. We have decided against any further muscle procedures for the time being and since May we have patched 1-2 hours a day. We were patching every day of the week but have since changed to 1-2 hours a day Monday through Friday.

Owen started Pre-school in early September and he absolutely loves it! He's making friends and learning so many new things. I've already noticed a huge improvement in him since the start of school. It's a short day for him, from 9am - 11:30am Monday through Thursday. He is always excited for Monday to come and hates when Friday's come and he doesn't have school.

On Monday, September 22nd, we had our yearly appointment with Dr. Murthy. We also had an appointment that morning with the Neurodevelopmental department for some testing on Owen's milestones, motor skills, etc. Everything seemed to go well but we haven't received the official written report yet. This is all a part of the treatment that Dr. Murthy recommends for his cranio patients. We had some time between that appointment and his appointment with Dr. Murthy so we passed time by visiting the Akron Zoo for a few hours. It was nice to have a day out with Owen and do something fun with him.

We met with Dr. Murthy in the afternoon to go over the results from Owen's CT scan that he had done on August 26th. We had been anticipating this scan and appointment because we knew this would be the year we'd discuss our options on whether or not Owen would need any additional surgeries related to his diagnosis of Craniosynostosis. We met with Dr. Murthy and he explained the results and how there are some existing defects from that surgery that have not healed like we were expecting them to. Part of that issue is Owen's forehead. From my understanding, he had plates and screws inserted during the initial surgery in May 2011. Since that time, those have dissolved and his body was supposed to fill that in with bone. It didn't give the full effect it was supposed to and part of his forehead (specifically above the right eye and his right eye socket) has started to revert back to what it was like before surgery, with that flattened appearance. I've always noticed it but so many people tell me they wouldn't know looking straight at him. It's a very obvious defect from the "bird's eye view."

So, we were presented with three options..... repeat the CVR/FOA from May 2011. My husband and I both said no to that. There is no huge medical need to repeat that procedure. The surgery in May 2011 had to be done to allow for Owen's brain to grow and develop normally. Most of our issues now are "cosmetic defects" related to being born with Craniosynostosis. The second option was similar with doing a bone graft of his own bone to fix the forehead. We were hesitant to do that since it is as invasive as the first procedure and would require cutting in to his skull again. Our third option was to use a bone putty to fill in those defects and to help give his forehead the symmetrical appearance it should have. Along with being presented with those options we were forced to discuss whether this was something we want to do now or something we would prefer to wait on.

These are the types of choices that are the truly gut wrenching moments as a parent. My heart does not want to put him through another surgery but it also tells me this is the right thing to do for Owen. A friend I was speaking to about this asked me "Would you want this fixed if it was your forehead?" and I answered "Yes." That right there tells me that this is the right decision, but it still doesn't make it easy. I want the absolute best for Owen and I know Dr. Murthy does too. It's just hard to always know what that is and when to execute our plan. Should we do it now? Should we wait? Should we let him decide? We discussed it at the office and determined doing it now and doing it before Owen is far in to school like 5th, 6th grade... would probably be for the best. There are many pro's and con's to this situation. A big con, and one that truly breaks my heart, is the idea of them having to use his existing scar and re-opening his head again. The positive is there is no cutting in to his bone with this putty procedure. The con is the scar and the likeliness that he will swell like before and not be able to see for several days. At 8 months old it wasn't a big deal to him. He had no idea what was happening, etc. He will be 4.5 years old by the time of this upcoming surgery and obviously more aware. It breaks my heart at the idea of him crying because he can't see, etc. I don't know how we'll get through this but I know we will. I've told myself many times since Monday that we are extremely fortunate that everything we've had to endure with him is fixable and, most importantly, we get to go home.

Being his Mother has taught me things I never imagined learning in my lifetime. So many people have told me over the years that he is lucky to us for his parents. No, we are the lucky ones. This boy is so sweet, so funny, so stubborn, so brave.... He's everything I wish I was and everything I dream to be. My goal at the end of all of this is for both of my kids to know I always supported them and fought for them. I want them to know I am always in their corner and advocating for what is best for them. It's hard to know what that is, but somehow, we always come through these obstacles and feel grateful we chose the path we did.

I love you to infinity and beyond baby boy. Mommy and Daddy are always here for you. Always.

"I'm a tough guy!

Thursday, November 7th was Owen's third eye muscle procedure (second on his left eye) at Akron Children's Hospital. He took the picture above the morning of the surgery. He told me "I'm a tough guy!" and wanted me to take a picture of his muscles. 

We had to arrive at the hospital at 11:45 for a scheduled start time of 1:15 for his surgery with Dr. Hertle. 

 We got to admitting and checked in and then had to go upstairs to check into the surgery floor. When we got there, the Nurse started the usual questions and examination. Owen was doing fine until she put the blood pressure cuff on his arm. He did not like that and got upset and cried. He quickly calmed down, but I know he could sense something was going on and he kept telling me "I want to go home."

It was mentioned at his 3 year well visit on October 31st that Owen has a heart murmur. It was brought up one time, when he was 2 weeks old and taken to Children's for his first asthma attack, but never mentioned again until last week. So, the Nurse practitioner listened and said she could definitely hear one but that she didn't think it was that bad and had she not been told to look for one, she doesn't know if she would have caught it. 

Anesthesiology had to clear Owen for surgery and once I mentioned that the Nurse who called for his pre-op questions cleared it, they agreed it was okay to proceed with surgery without him going through a Cardio work-up. 

The operating room Nurse came back to get Owen a few moments later and he grabbed her hand and walked right back. No problems, no fuss. I was so proud of him! I wanted to kiss him before he walked back but when I saw how easily he walked away with the Nurse I didn't want to draw attention and give him a reason to get anxious so I let him go. He went back into surgery almost a full hour before he was scheduled to, so it was nice we didn't have to wait around very long.

The blessing of these eye muscle procedures is that they don't take very long. Owen was in surgery for maybe 25 minutes at most.

Dr. Hertle came up to us in the waiting room and said Owen did very well and was on his way back to recovery. He told us that Owen said "I want my Mommy" when they were putting him to sleep but he handled everything like a champ. 

When we made it back to recovery he was still sleeping. The Nurse had to forcefully wake him up, which he was not happy about. Once I was holding him and we were snuggling he was okay and went back to sleep. We were moved to Phase II recovery a short while later and they monitored his vitals a little while longer and then released us to go home. 

Owen was a little cranky and quite lethargic the rest of the day. But, I did manage to get a smile. We laid on the couch most of the day and watched Monsters University. I gave him a dose of pain medicine and had to sneak it into his sippy cup. Addison had basketball practice so I left to take her to that and when I texted to check on him, he was passed out. 

When I got home I snuggled him a little while longer and then moved him upstairs to his bed. He didn't even budge. He slept almost 11 hours too. He desperately needed it! He was so tired from the events of the day. 

Yesterday you could barely tell he had surgery done. He didn't look swollen or bruised and you couldn't even see the red on his eye. But today, you can definitely tell. 

 We have his follow-up appointment at 8:30 in the morning with Dr. Hertle. I am hoping to hear this was the last eye muscle procedure, but ya never know. 

 Owen was given a stuffed animal dog by his Phase I recovery nurse and he named him Copper. He desperately wants a puppy and has been asking for one for awhile. This will have to do for now.

Surgery #4

Owen went to see Dr. Murthy at Akron Children's on September 16th for his yearly check-up. Everything is good and there is nothing of any concern right now. We'll go back next year in September for a CT scan and he'll go through developmental testing to check where he is and to ensure he's on track for his age.

We also had to go see Dr. Hertle for a check-up on September 30th and it looks like we'll be going through another eye muscle surgery. His fourth surgery overall, third on his eyes. We're on the books for November 7th at 10:30 am.

Owen turned three years old on September 21st. We did a Spongebob birthday theme for him. He was certainly spoiled. He's developed an obsession with all the typical boy stuff... Toy Story, Cars, Spongebob, Teenage Mutant Ninja Turtles, Thomas... he loves it all. He is so much fun.

We've now been post-op from his CVR/FOA for almost 2.5 years! It amazes me to think of everything he's gone through in his short life. He will have one amazing story to tell his children someday!

The other side

Two years ago, on May 27th, 2011, Owen had surgery to correct his birth defect... right coronal craniosynostosis.

The day of his surgery was the most afraid I had ever been in my life. I didn't know what the future held for my sweet, loveable little boy. As his Mother I felt like a failure. I felt like I let this happen to him and it was supposed to be me who fixed it but the reality was, I was powerless to stop it. My husband and I had to trust two surgeons we had just met with our precious baby boy. We had to trust them with his life.

Dr. Ananth Murthy (Plastic and Reconstructive surgery) and Dr. Roger Hudgins (Neurosurgery) are miracle workers. What they did for our Owen that day.... there are no words to express the gratitude.

A year post-op we faced two eye surgeries to correct lazy eye issues in both the right eye and left eye. My little boy did it all with a smile. So many people told me how resilient kids are before the first surgery, but until you witness your child going through something like this, you can't understand what they mean. But it's true. Kids are amazing. MY kid is amazing.

Two years post-op, Owen is a typical two year old little boy. He loves Toy Story, Cars, Spongebob, Thomas the Tank, splashing in the mud, playing outside, snuggling with Mama and giving hugs and kisses to his Daddy and Sissy. He's everything I dreamed of when I heard the words "It's a boy!"

The past two years have been quite a ride, but the for the first time in a long time, I am not afraid of the future. I am excited for what comes next.... and with this little boy in my life, I know it will be incredible.

Goodbye 2012!

2011 was definitely a huge and trying year for our family. We faced Owen's diagnosis with Craniosynostosis and his major surgery on May 27th.

It's amazing to look back now, at the end of 2012, and think of everything my little man has been through. He is now 19 months post-op from his major surgery and he is doing INCREDIBLE! I wish I could have seen where we'd be now the day we were faced with his diagnosis. It would have made the moments of panic and anxiety easier to bare. I spent so many days living in fear of what was wrong with my son and what his future held.

2012 was not an easy year, but it was a much easier year to bare. Owen had his first eye surgery on May 3rd to correct strabismus in his right eye. A few weeks later we were told he needed surgery on his left eye. He had that surgery done on July 16th.

His eyes look amazing now and he's just the most incredible little boy ever. I always ask him "Are you a baby?" and he answers back "No, I mama's baby." It melts my heart! <3

Owen has developed a fascination with Toy Story. It's the cutest thing ever! He will literally watch the movie 4 times a day or more. He loves Buzz Lightyear and he went crazy when Santa brought him a Buzz doll for Christmas. He has carried Buzz with him everywhere since Christmas day and he goes to sleep with him every night.

I really could not have asked for a better way to end this year. My son is happy and healthy and thriving like every other 2 year old boy out there. It makes my heart so happy! <3

Guess who's Two?

I'm late in posting this, but better late than never, right?!

Owen turned two years old on September 21st! We had a Hot Wheels themed party for him. A very small and simple gathering with our family and friends. It was a truly great day!

That little boy has been through so much in two short years, but he's always smiling. Always so happy.

 We went to a Corn Maze a few weeks after his birthday. I snapped this picture, and it's just a simple picture of him walking, but I looked at it for so long and just couldn't believe how BIG he is now.

I said he's always happy... except for here. ;) He wanted Mommy to carry all 33 lbs of him around a 2 mile Corn Maze and I told him to walk. He was not happy about that!

 Being his Mother is the best blessing. I spent many dark days and nights after we lost Audrey in 2009 wondering if I'd have another child. I couldn't have dreamed that I would some day have a son. He's all boy. He loves cars, trucks, trains, Caillou is his favorite cartoon and he loves to dance when it comes on. He's talking more and more. I am beginning to believe he'll never say "I love you." Adam tried bribing him with candy after trick-or-treat to get him to say it and he still won't do it. Stubborn child! :-)

Look at how adorable he is in his costume?! He was the cutest dinosaur I've ever seen, and I'm not just saying that because he's my son.

Things have been very quiet on the Doctor front, and I am loving it! He'll go back to see Dr. Hertle (Eye Doctor) some time in January, and as long as that visit goes well, we shouldn't have to go back for awhile. He won't see Dr. Hudgins (neuro) anymore and he doesn't have to see Dr. Murthy (plastics) until next September. Is this really what it feels like to be on the other side of Craniosynostosis? If it is... I think I could get used to this. I feel like we're finally starting to become a "normal" family. It's a good great feeling!

Check-Up Month

Owen had two check-ups this month with his surgeons. He had to see Dr. Hudgins (neurosurgeon) on September 5th and Dr. Murthy (plastic surgeon) on September 6th. 

His appointment with Dr. Hudgins was his first one since his 2nd post-op exam last September. We already got the discharge from Dr. Hudgins and we no longer have to go back to see him! One surgeon down, two more to go! =)

Dr. Hudgins did scare us a little when he mentioned Owen needing another surgery to fill gaps in his skull. I was a little panicked, but was relieved in knowing we'd see Dr. Murthy the next day and he could answer any questions we had.

Dr. Murthy told us that there are no plans for another surgery at this time. It may come to a point where we need to do that, but it could be when Owen is older and can make that decision for himself. I was so happy to hear that! We also got the okay to go to yearly appointments with him. We don't go back until next September when Owen turns 3! YAY!

When Adam was leaving the appointment with Owen a comment was made about him being a poster boy and Adam was slightly confused by what he meant, then he showed Adam the poster of Owen he has in his office for the Craniofacial Clinic at Akron Children's. They had approached us about the idea at his last appointment. They had a HIPAA release on file from the TV interview last year, so they had the authorization from that and our verbal authorization. After they had asked about that we never heard anything until the check-up last week. Adam called me after the appointment to tell me how everything went and then told me about the poster. I was moved to tears. It is such an honor to be a part of this and to hopefully help another family going through this and being uncertain of the future.

It is truly amazing to look at the pictures they used on the brochure, to see the transformation from before surgery to after. As Owen's Mother I loved him exactly how he looked... whether he had craniosynostosis or not...

Owen will be two years old on Friday the 21st. It's been a long and hard two years at times, but he has always been such a happy little boy. I am so blessed to be his Mommy. He is all boy now. He loves cars, trucks, trains, tractors. His favorite cartoon is Caillou. We're doing a Hot Wheels Theme for his party and I am so excited! 

He's talking a lot more now. He sometimes talks in a language only we can understand but then he also says things as clear as can be sometimes. I often worry about his development due to the craniosynostosis, but all of his Doctor's have assured me he is fine and I just have that typical Mom worry. 

I was hoping 2012 would be our year to put this journey behind us a little more, but now it looks like we're going to hope for a better 2013! As much as I love Akron Children's, I love being a normal family not having to make visits there every other month for check-ups with this specialist and that specialist. I know we're blessed in the sense that everything he has is correctable and we don't have to live at the hospital, but it can be very exhausting at times.
 
His smile is what gives me the strength to go on, when I feel like I can't handle the sadness of this condition anymore. <3

My Cranio celebrity! This is the brochure for the Craniofacial Clinic at Akron Children's Hospital. Incredible to see! Brings tears to my eyes still. I'll always struggle with what my little boy has been through but I'll also always be so proud.