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.
