Milestones

 Owen is officially 2 months post-op, actually heading into the 3 month mark. August 27th will officially be 3 months since his surgery. He's turning 11 months old soon and just blowing me away with his growth. Every new milestone is very bittersweet for me - one because of losing his sister 2 years ago and two because, had this condition gone untreated, he may never have reached these milestones.

 I am thankful beyond words for the miracle his surgeons were able to perform on him. There just aren't enough words to express my gratitude. I love each of my children the same but then they also each hold a special place in my heart. My oldest - she made me a Mother. She taught me what unconditional love is. My sweet Audrey, she's my Angel. Plain and simple. She taught me how to pick myself up when I didn't think picking myself up was even an option. Then there is Owen. He's the rainbow at the end of a very dark storm for me. His smile melts my heart and gives me that feeling I never knew I could feel again - happiness.

 Every time I look at his scar, it breaks my heart to see what he had to endure just to grow and be a normal kid like everyone else. No baby should ever have to go through what our cranio babies have had to. When the OR Nurse came to us and had to take him back for surgery, part of me wanted to grab him and run and never look back. To me, he was perfect. I love him no matter what. But my heart knew that he deserved a chance at a better life and if he didn't have the surgery, he wouldn't have that. My love and strength (that I credit to my Angel giving me) allowed me to hand him over to the OR Nurse and just.... trust.

If you come across my blog because your child has been diagnosed with craniosynostosis, I want you to know a few things... One, it's OKAY to be scared. It's okay to cry. Two, babies are so resilient. Your little one will blow you away with how well they recover from this... and most importantly, every new milestone they reach is another confirmation that making the decision to do the surgery is the RIGHT choice.

Today is my 25th birthday and I've spent so much of my time today reflecting on my life and looking at my beautiful children, focusing on the wonderful things that I have been blessed with in my life. <3

8 weeks/10 months

Wow - today is 8 weeks since Owen's surgery! I can't believe just 8 weeks ago we were sitting by his side in the PICU. Today he is now 10 months old (as of yesterday!) and is doing amazing.

I am so thankful for every day I have with my children. We often take life for granted and we often think life is going to be sunshine and happiness, but sometimes it never quite works out the way we expect.

Last week Owen had a check-up with the plastic surgeon. He is very happy with Owen's progress. There is still a slight concern with his left head tilt but we've increased the neck stretches at home. His therapist feels happy enough with his progress and said the next time he goes may be the last time! I couldn't believe it when she said it. Wednesdays for the last 6 months have consisted of me coming home from work, picking up little man and going to therapy. It's become a part of the routine. I'll be glad when the time comes for him to "graduate" from therapy, but I'll be a little sad too. His therapist was a HUGE part of us pushing the issue with his skull further that ultimately lead to his diagnosis of craniosynostosis. The next check-up with the neurosurgeon is September 7th and the plastic surgeon's next check-up will be October 27th.

I'm starting to get into party planning mode. Addison's 5th birthday is next month on the 25th and Owen's first comes the month after on the 21st. What was I thinking having their birthdays so close? I'll barely have recovered from Addison's party and then it will be time for Owen's.

Owen is cruising around the furniture more and more and now has started clapping. He's quite the ham and has the most handsome smile. He can melt my heart with one toothy smile and he knows it too. :)

I have several new friends I've met through the cranio community whose children have had surgery in the recent weeks. It breaks my heart every time a sweet baby has to go into surgery but when the moment comes that I hear they made it out of surgery okay, my heart swells with happiness. Our babies have been given a chance at a normal life and to have the medical technology now to do something about this - it's just amazing.

Absolutely amazing.

5 weeks

Owen is now 5 weeks post-op! It seems like time is flying by. I can't wait until we can look back and say "Wow, it's been 1 year.." etc... May 27th is a day that will forever be etched in my memory. Everyone has days in their life that they can't forget. That will most certainly be one of them.

Little man turned 9 months on the 21st of June. He had his check-up on Monday the 27th. He is a happy and healthy 22 lbs 7 oz and 28 inches long. His pediatrician is very happy with his development and where he is at with his milestones. We're so blessed that even with all of the obstacles he's faced - he's met all of his milestones.

He has a check-up with the plastic surgeon on July 14th. Just to check where his incision is at with the healing process. He's still going to physical therapy once a week. His therapist mentioned that we might be switching to bi-weekly appointments pretty soon. She's very happy with his progress. He still does the left head tilt but it definitely seems to be more of a habit thing than an actual issue. She said she'll see him for a few more weeks on a weekly basis and then we might be switching to the bi-weekly appointments.

We are so happy with the wonderful team of Doctor's that Owen has surrounding him. His new pediatrician is amazing, his plastic and neurosurgeon's are just incredible and his physical therapy... I just adore her. There aren't enough words to say how blessed we feel to have so many people who care about our son and his well being.

 This was 4 weeks post-op at the water park :)

My princes

 My family <3

 5 weeks post-op

 Love his gorgeous blues

Owen Hunter 9 months old

9 months

How is it even possible that this baby:

Became this baby:

He's been through so much in his 9 short months and he's done it all with a smile. Seriously. I am SO proud to be his Mother and to get the honor of watching him grow.

He's 9 months old and he babbles "Dada" and "Mama" (but only says Mama when he cries - stinker) and he is crawling more now than just doing the Army crawl. So far, the kid hasn't met a food he doesn't like. He ate cranberry sauce the other night and LOVED it. He was screaming for more. :) He pulls himself to stand (and I've even caught him standing unassisted for a second or two) and he reaches out for us when we reach for him, but what he does after is funny, he'll grab our arm and tuck it under him like he's saying "You're picking me up. You have no choice."

At the last appointment with the neurosurgeon on the 13th, he was 22.4 lbs, but he has his 9 month well baby visit on the 27th so we'll know how much he weighs for his 9 month age soon.

I couldn't have imagined when he was born everything he'd have to endure at such a young age. I couldn't have imagined in my wildest dreams that my son would be diagnosed with craniosynostosis and require a major skull surgery. I say it all the time and I'll continue to say it until I am blue in the face, I am so blessed. We've had a rough road the last two years and there have been some dark days, but at the end of the day, we're all together and we're alive and happy. That's all that matters.

Friday is 4 weeks post-op and the 27th will be the official 1 month mark. It seems like time stood still the second they took him back to the OR and my heart skipped a beat, and now look, we're past the worst part... and finally on the other side.

http://youtu.be/zaqAQacXhp4

The link is to a video the Children's hospital where Owen had his surgery did about his neurosurgeon. I can't say enough how awesome Dr. Hudgins is. I just can't put it all into words.

More Post-Op visits

Owen had his follow-up visit with his plastic surgeon today.

I can't say enough positive things about his surgeon. My Husband and I praise him every chance we get to everyone we can. He is a truly amazing person.

He saw Owen and said he looks incredible and he is healing very nicely. Things are exactly how they should be for him being 2 1/2 weeks post-op. Friday will make 3 weeks since Owen's surgery.

It feels so good to be on the other side of this condition. Now we can focus on Owen's recovery and what comes next. His surgeon recommended we look into a TOT Collar to help Owen with his left head tilt. He's done that ever since he started to get good head control and he's been in therapy for it since January. We've noticed some improvement over the months and it seemed in the first few days after surgery that it was gone, but it's back. His therapist has commented before that she thinks it may be more out of habit now than an issue. The TOT Collar will basically "train" him on holding his head up straight and not wanting to automatically tilt it to the left. He has his first therapy appointment since surgery on Wednesday so we plan to ask his therapist about it then.

Owen hasn't let this surgery slow him down for a second. He's now babbling "Dada" all the time now. He'll only say "Mama" when he cries. I even caught him standing completely unassisted yesterday. It was only for a split second but he did it. He won't crawl with his hands and knees but he loves his army crawl. That kid can move! I'm so proud of him. I think any sick person in this world should have to spend a day with a child battling an illness, disease or who just had a major surgery. It would definitely help to put things into perspective. They bounce back so fast and they don't waste any time moping or whining about their pain. Owen is a true testament to that. He's incredible!

His next follow-up visit with the plastic surgeon is scheduled for July 14th. He wants to see Owen again to check on his incision and watch how it heals. He has an excellent team of Doctor's and I am confident he is receiving the most amazing care out there. No matter how many trials and tribulations our family has to go through, we will make it through this. We have each other. <3

Post-Op

Owen was supposed to see the plastic surgeon and neurosurgeon both on Wednesday but early that morning the plastic surgeon's office called and rescheduled his appointment for Monday morning. I guess Dr. Murthy is in surgery all day and he was running behind and wouldn't be back in time to see Owen for his appointment.

We did get to see the Neurosurgeon and he said Owen looks fantastic. He is very happy with his progress and said he looks amazing for having just had surgery 2 weeks ago.

Owen doesn't have to go back to see the Neurosurgeon until September 7th - 2 weeks before his 1st birthday. When they scheduled the date I had a "holy crap - he'll be almost 1 by then" moment.

I can't believe it.

I'm so thankful - SO thankful - that Owen made it through his surgery with no complications and I'm so thankful he's doing so well. He'll go back to physical therapy again next Wednesday. His left head tilt seemed to improve for a few days but he's back to doing it again. Not as often as he was, but it's still there. Even the neurosurgeon commented on it at his visit. He said to keep up with the therapy because we don't want him to get in a habit of keeping his head that way and undoing all of the work he just had done.

Akron Children's has been incredible to our family and beyond incredible to our son. I'm so thankful for them.

My little Mister - 2 weeks after surgery. He's like a brand new boy! I still look at him sometimes and I think how different he looks. I'm still getting used to the changes. I loved my son just the way he was before the surgery. I knew in my heart something wasn't right and it was obvious by looking at him that things weren't right... but I didn't care. He's my baby and I loved him regardless of those "imperfections."

Even with everything he's been through, I am so thankful his happy personality never changed. He was always smiling, always laughing. Even when his eyes were so swollen that you couldn't see his eye lashes, he was laughing.

He still loves to play with sissy and try to eat her hair... and his sissy is a huge sport and lets him. =) She's the best big sister EVER. When Owen's eyes were swollen shut, she knew he couldn't see her, so she made funny noises to get him to laugh and smile.

Everyone says they have the best kids, and while that may be true, I have to say I have the best kids. =)

I don't know what the future holds for our family or what may happen with Owen's condition, but I know right here, right now that God performed a miracle when he gave us that little boy and I'll spend the rest of my life being thankful he brought him back to us after his surgery. <3

1 week later

This time one week ago, we were sitting by our son's side in the PICU. He had just gone through a 4 hour surgery to correct his craniosynostosis. His face was so swollen and bruised and we had no idea it was only going to get worse before it even got better. By the time we came home Sunday, his face looked like this:

Seeing his sweet little face like that absolutely tore my heart in two.

Now, just 5 days later, my sweet boy looks so much better.

He is my brave warrior. Everything he went through and everything he endured and he's done it all with a smile on his face. Even when he couldn't see, he'd hear my husband and I talk to him or he'd hear his sister making funny noises and he'd just smile.

Everyone told me before the surgery that I'd be amazed at how fast he'd bounce back and how resilient kids are. For anyone who finds this blog whose child is facing craniosynostosis surgery: It's true. Owen is just 1 week post-op and aside from some minor swelling and bruising, he's back to his old self. His scar is getting better day by day. I've noticed some scabbing so that means it's healing and about to fall off. I'll be so happy when that day comes!

Visit some great links for support:


The Jorge Posada Foundation

Cranio Care Bears

Avery's Angel Network

CCAKids.org


All of these sites have so many helpful links, information and ways to reach out for support. They were a true blessing to my family during one of the hardest times.