Cranio Surgery Support Page
               

2004

If you have questions about Sydney's cranio surgery, or would like to discuss your child's surgery, please feel free to email Michelle... We have talked to quite a few parents in the St. Louis area and elsewhere, and will be honest about our scary, but very positive experience.

If you would like to see Sydney's before and after CT Scans, click on this link... While they are not graphic, they may be a little disturbing if your little one is going through this... Scans


2010
  
   
 

Sydney's Timeline Pictorial (Dad's Diary)
how it went... and how she is... (text updated 2006)

   

1 week before surgery
1/20/03
1 day before surgery
1/26/03
1 hour before surgery
1/27/03
1 hour after surgery
1/27/03 - 3:00pm
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About 7 hours after surgery
      1/28/03  9:00 pm
1 day after surgery
in between dressings
Almost 2 days after surgery
height of her swelling
Dad's note
1/29/03 - 11:00 am
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Surgery went great - lasted about 6 hours - there was a lot of relief when it was done - first night was very long, including some drop in oxygen levels and elevated heartrates.  Next day, she was able to relax more, ran a fever and ate a little...

Fever got slightly worse, before now, but is falling and she should move out of the PICU (Pediatric Intensive Care Unit)... She is currently eating some, resting a lot, and improving each hour... swelling has not started to go down yet, and the pictures don't quite convey it all, but she is doing pretty good and Mom and Dad got some rest (OK, mostly Dad).


 

2 days after surgery
actual height of swelling
   
3 days after surgery
Most lines out, looking better
4 days after surgery
There's our Popeye
4th day (Friday) after surgery
Going home
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1st full day at home - 1/31/03
She is off all meds now and on Tylenol with Codeine (Hence the drunken look)
Getting fitted for her helmet
This will not have to be worn at all times, as it is not for re-shaping the head and for protection only.
   
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Dad's note: 1/31/03 - 10:00 pm sporting the helmet that she wore for EXACTLY 1 day - to take pictures of her in it... Around 1 month after surgery
         hangin' out with her big brother.
1 - 2 Months after surgery
(Mar '03)

     We're home, we're tired... Sydney is doing great, other than a little pain when moving her around, but that too is going away.  She looks great and is starting to eat (although tough with her still being on pain medicine...)  She's starting to smile again, starting to laugh again, and looking like her beautiful self again...

 

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3-4 Months after surgery
(May-June '03) wearing herself out
June '03 July '03 Dad's note: 8/17/03 - 10:00 pm
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     It's been a long, beautiful summer in St. Louis and Sydney is a wonderful, well-adjusted, and smart little girl (so say her slightly biased parents).  2 weeks before her birthday and she has been walking all over the house for a week and a half now, and been taking steps for a month.  She can call her big brother and dog by name... oh yeah, and Mommy and Daddy too... She's imitating everything, having little conversations with herself, and learning a great deal about how to play cars... She's absolutely perfect... and her hair has just about covered the scar...

     Scary and amazing all at the same time.  Our little girl had 2 rough days in the hospital and that's about all, with great doctors and a wonderful 5 month old spirit, she got through something that was by far harder on all her family than it was on her.


Helpful and Honest Links

CCAKids.com - a great site with a lot of information
Plastic & Craniofacial Surgery for Infants & Children - best page for description of sutures
Children's Hospital LA - another good generic site

 

Growing up with a perfect head!


2004

2005

2006

2007


2008



2009


2010


2010
   



   
Why do we have this web site?

Well, when we went looking for information on our daughter's condition, we found some information, but mostly it was definitions and pictures... What we were looking for was a real account of a parents trip through the surgery and someone we could ask questions.  Sydney's surgeon (Dr. Jeffery Marsh) and his team seemed to be more helpful than other groups that we have heard about since, and we were able to ask question after question and get all the answers.

Since her surgery, we have found that not everyone knows what questions to ask... it IS a scary proposition after all.  We have also found that other parents of Cranio kids have found our account of Sydney's experience very helpful and many have talked to my wife and myself (mostly my wife) about our experience.

Anyway, we wanted to have a spot that would not only show parents our experience, but also share the 'good' informational web pages that we came across in our late night cranio searches...