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.

Strength

Last week on the 11th we got a call from the eye Doctor that there was a cancellation in the schedule and he could do Owen's eye surgery on Monday the 16th. As anxious as I was to "get it over with," I was almost hesitant to accept a date that soon. I just wasn't prepared to do surgery in 5 days, but I figured it was a take it or leave it type situation and right now Owen is healthy, no illness, no asthma issues, so now was the right time.

They put him on the schedule for an 11 am surgery but by Friday had called to confirm everything and he was bumped up to 9:45. The earlier, the better. The night before surgery prep with the no liquids and no food really stinks! We don't eat or drink because Owen can't eat or drink. We all do it to be fair to him. Even though he doesn't really understand, he does get very fussy and cranky without his morning cup of milk and his banana. 

We arrived at the hospital at 7:45 for check-in. Got him registered and went up to the surgical floor to begin the long and boring process of being checked over by the nurses, seeing the Nurse Practitioner, talking to the anesthesiologist. The Doctor came in, checked Owen out, marked above the left eye just to make sure the correct eye was operated on and then they came in a little early, around 9:15, and said they were ready for him. 

They bring a Child life specialist in the room during the exam process to show the children the anesthesia mask, have them leave the room and come back in a few minutes so they see Mommy and Daddy are still there, that sort of thing... They came in for Owen, but I told them it was kind of pointless, because again, he doesn't really understand what is happening. He's not quite two years old so his mind and memory doesn't really grasp what is happening.

When the OR Nurse came in to take him he went to her with no problems. We watched her walk down the hall with him and he was just babbling away the whole time. We did hear him say "Oh no" as she opened the doors to the OR. It was kind of funny, but also kind of sad. 

I ran down to the cafeteria to get a snack and drinks for Adam and I while we waited. The last procedure wasn't very long so I knew I didn't have much time, so I just grabbed some donuts, two cherry pies and two drinks and headed back up to the surgical waiting area. 

Owen was done with surgery around 9:45 or so and we got back to recovery pretty quickly to see him. He did wake up in Phase I recovery before we got back there and when we finally did get back there, I was walking by a bed and saw a little boy with blonde hair being rocked by one of the volunteers. It was Owen. He had woken up from the anesthesia and was crying so the volunteer picked him up and rocked him. Adam and I thought that was so sweet and it really touched us, that in the moment we couldn't be there to comfort him, someone else was. It still makes me a little teary eyed when I think about it. Akron Children's is an incredible facility and their Doctor's and Nurses are amazing!

Speaking of the Nurses. The one that Owen had during Phase I recovery asked where we lived and we told her we're a local family, we live maybe 25 minutes away from the hospital. She said it was surprising to have a local family there for that Doctor because so many of his patients come from across the country, even the world. She said one of his last patients came from Thailand! That's just incredible to me. We have a world class facility with a world class surgeon right in our back yard practically. I could not imagine having to make a trip like that just to get my child good medical attention. 

Shortly after Owen woke up in Phase I, we were moved to Phase II. They monitored his vitals a little longer and then gave us the all clear to head home. We stopped by Walgreens and filled his prescription for his pain medicine and we were home shortly after Noon. It was so nice to be home after waking up so early and dealing with all of the chaos of a surgery day. Even after this being our third time going through that routine, I'll never get used to the nerves and anxiety that comes along with it. The night before surgery Addie was even a little anxious and started crying. She said to me, "I wish he was born, but why does he have to have so many things wrong with him?" Talk about breaking my heart! I didn't say that I have asked that same question in my head a million times. I answered that Owen is a perfect little boy and we are very fortunate that everything that has been wrong is correctable and treatable. I absolutely love the way Addison loves him and how protective she is of him. He's her "Bubby wubby."

As sad as I was to put Owen through another surgery, I definitely did not mind the extra hugs and snuggles I got from him. He basically laid on me all day. We even passed out on the couch together and took a 2 hour nap! He got a few doses of pain medicine and was in bed by 8:30. He woke up in a much better mood and definitely seemed to be back to the old Owen by morning.

He had a follow-up with the surgeon at 1 pm Tuesday and his surgeon said he is very impressed with how Owen's eye looks and said that Owen's brain must be so excited that his eyes are finally working together. I know I am excited! It's so amazing to look at him and see him focus on something with both eyes. His eye issue wasn't too bad when looking straight at him but it was definitely noticeable when he had to turn his head to look at something. Before, you'd see the right eye roll up while the left eye focused. Then, once the right eye was fixed you'd see the left eye roll up while the right eye focused. Now they both focus together and it is so beautiful to see!

He has another check-up scheduled for August 7th, and two appointments scheduled in September. One to see Dr. Murthy (plastic surgeon) and Dr. Hudgins (neurosurgeon) and then... maybe then... we can take a little break from the monthly hospital trips to Akron Children's. I've counted, and so far, we've made seven trips there and had two surgeries, with three more appointments left before the end of the year.. maybe more. I don't know yet. 

Anyways.... I'll end this with a few pictures and say good night. It's been a long week and this mama is very tired!

 We were watching Caillou on Daddy's phone while waiting. Owen LOVES Caillou!

 Doctor Owen ready for surgery! They let him have a scrub cap to play with.

 On our way to Akron Children's Tuesday for his follow-up appointment. He got a teddy bear from the Volunteer in Recovery that was holding him. The bear is now named "Teddy" and Owen sleeps with him at night. <3

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!