kctruvy
05-06-2008, 11:03 PM
Hello! I am Casey, I know my husband has introduced himself to you all, but I am not computer savvy so I had to wait to get his help to get set up. And now, I am finally ready to share our story.
Owen was born Dec 17 2007. It was one of the best nights of my life. I had never felt the love I felt for him...I am a new mom and to me Owen was perfect! I delivered him vaginally. He took his time coming out. When I was pushing there were 4 minutes between each contraction, so it took 3 hours of pushing to finally get him out. He was 6lb 11oz...healthy and beautiiful!
In the hospital we joked about his head being so long. We thought it was because he spent 3 hours in the birth canal. We made Alien vs Predator jokes...and we dropped it.
I took Owen in for his 1 week well baby check up and Dr. Morrison(Owen's Dr) told me all the new baby stuff...and squeezed in a bit about how he'll keep an eye on his head, but it should shape out. I didn't think much more about it. Until my best friend(who is a nurse) made a comment about Owens head one day when she came to visit. Kinda worried but tried not to think about it.
I took him in January 17 for his 1 month appointment. Dr. Morrison told me he wanted to get a CT scan of Owen's head, because it hadn't rounded out. He told me this could be a number of reasons, from a tumor, to craniosynostosis, to just a funny shaped head. Of course I tried to keep my cool, but didn't (you'll start to see a pattern) He had a CT scan scheduled at Childrens Mercy in KC the following Tuesday.
Okay so Im kinda freaking out, but trying to keep my cool because we dont know anything.
So we get the CT scan done (Owen was just 5 weeks old) and go home. That was plenty for one day. It was so hard not to feed him or let him sleep... I didn't expect to hear from Dr Morrison for a week or so. He called me that day and asked me to come in to meet with him. I knew this couldn't be good. So I called up my mom, asked her to come with, in fear of what he would tell us.
Dr. Morrison said Owen has craniosynostosis. At the time, that ment nothing to me. I knew it could be corrected and now lets move on to the next step. He tells us he doesn't know much about it....but he referred us to Dr Sengahl at Children's Mercy. He scheduled an appointment with him on March 12. This is January...so I need to wait 2 months to find out whats wrong with my kid!!!! Yeah that didn't happen. That was about the time Chris got into research mode and we knew mmore about cranio than our Dr.
So we wait....
Dr. Sengahl confirms Owen has Saggital Craniosynostosis. He tells us all about it. And wants to do a CVR to fix it.
So that was the plan...he wanted to wait until Owen was 9 months old. Didn't want to scedule anything yet. So Chris and I research CVR, and some other Drs who might be able to get Owen in earlier or might have a different opinion. Weeks of research and tears and worrying.
Thanks to Cranio Kids we learned about the Spring Mediated Cranioplasty.
and Dr. David at Wake Forest in NC. But we live in KC...hmmm Lets go for it!
So Owen is scheduled to have the springs put in May 28. We're planning to fly in the 26th and stay all week.
Chris has found many of you who have shared your stories and even some phone calls to help us in our decision and what to expect. I have finally gotten to the point that I am ready to talk and share our story.
I've been reading alot of your stories and am glad to know Im not alone.
I have alot of silly concerns that I have already had answered just by looking at some of the posts here!
We feel so blessed to have such an amazing support with our families and friends, and now our Cranio Buddies!
Check out our Caring bridge site:
www.caringbridge.org/visit/owen (http://www.caringbridge.org/visit/owen)
New add: June 23
We are almost 4 weeks post op...
Owen is doing wonderfully! He is almost "more" Owen than before...does that make sense...He just seems more active...but that could have something to do with the age. His head is shaping up nicely... His stitches are still very much there...but I understand they are supposed to be. It was a hard road...but we got through it...now we just have to wait to ge tthe springs removed...Dr. David is thinking in November(ish)
Owen's Regular DR. was shocked at how quickly his head had changed. We are supposed to be going to see an ophthalmologist in a few weeks, there is a chance that Owen may be getting a little strabismus...but he thinkis it may be psuedo...
I will try to get some new pics up soon...He is doing great! I am so glad to have the first surgery over with!!!
Owen was born Dec 17 2007. It was one of the best nights of my life. I had never felt the love I felt for him...I am a new mom and to me Owen was perfect! I delivered him vaginally. He took his time coming out. When I was pushing there were 4 minutes between each contraction, so it took 3 hours of pushing to finally get him out. He was 6lb 11oz...healthy and beautiiful!
In the hospital we joked about his head being so long. We thought it was because he spent 3 hours in the birth canal. We made Alien vs Predator jokes...and we dropped it.
I took Owen in for his 1 week well baby check up and Dr. Morrison(Owen's Dr) told me all the new baby stuff...and squeezed in a bit about how he'll keep an eye on his head, but it should shape out. I didn't think much more about it. Until my best friend(who is a nurse) made a comment about Owens head one day when she came to visit. Kinda worried but tried not to think about it.
I took him in January 17 for his 1 month appointment. Dr. Morrison told me he wanted to get a CT scan of Owen's head, because it hadn't rounded out. He told me this could be a number of reasons, from a tumor, to craniosynostosis, to just a funny shaped head. Of course I tried to keep my cool, but didn't (you'll start to see a pattern) He had a CT scan scheduled at Childrens Mercy in KC the following Tuesday.
Okay so Im kinda freaking out, but trying to keep my cool because we dont know anything.
So we get the CT scan done (Owen was just 5 weeks old) and go home. That was plenty for one day. It was so hard not to feed him or let him sleep... I didn't expect to hear from Dr Morrison for a week or so. He called me that day and asked me to come in to meet with him. I knew this couldn't be good. So I called up my mom, asked her to come with, in fear of what he would tell us.
Dr. Morrison said Owen has craniosynostosis. At the time, that ment nothing to me. I knew it could be corrected and now lets move on to the next step. He tells us he doesn't know much about it....but he referred us to Dr Sengahl at Children's Mercy. He scheduled an appointment with him on March 12. This is January...so I need to wait 2 months to find out whats wrong with my kid!!!! Yeah that didn't happen. That was about the time Chris got into research mode and we knew mmore about cranio than our Dr.
So we wait....
Dr. Sengahl confirms Owen has Saggital Craniosynostosis. He tells us all about it. And wants to do a CVR to fix it.
So that was the plan...he wanted to wait until Owen was 9 months old. Didn't want to scedule anything yet. So Chris and I research CVR, and some other Drs who might be able to get Owen in earlier or might have a different opinion. Weeks of research and tears and worrying.
Thanks to Cranio Kids we learned about the Spring Mediated Cranioplasty.
and Dr. David at Wake Forest in NC. But we live in KC...hmmm Lets go for it!
So Owen is scheduled to have the springs put in May 28. We're planning to fly in the 26th and stay all week.
Chris has found many of you who have shared your stories and even some phone calls to help us in our decision and what to expect. I have finally gotten to the point that I am ready to talk and share our story.
I've been reading alot of your stories and am glad to know Im not alone.
I have alot of silly concerns that I have already had answered just by looking at some of the posts here!
We feel so blessed to have such an amazing support with our families and friends, and now our Cranio Buddies!
Check out our Caring bridge site:
www.caringbridge.org/visit/owen (http://www.caringbridge.org/visit/owen)
New add: June 23
We are almost 4 weeks post op...
Owen is doing wonderfully! He is almost "more" Owen than before...does that make sense...He just seems more active...but that could have something to do with the age. His head is shaping up nicely... His stitches are still very much there...but I understand they are supposed to be. It was a hard road...but we got through it...now we just have to wait to ge tthe springs removed...Dr. David is thinking in November(ish)
Owen's Regular DR. was shocked at how quickly his head had changed. We are supposed to be going to see an ophthalmologist in a few weeks, there is a chance that Owen may be getting a little strabismus...but he thinkis it may be psuedo...
I will try to get some new pics up soon...He is doing great! I am so glad to have the first surgery over with!!!