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Sydney's
Cranio Surgery (Condition: Craniosynostosis) A Parent's Reference and Support Web Page |
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| What is Craniosynostosis? |
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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. Craniosynostosis means fused bones of the skull. It is a condition that some children are born with or later develop. To better understand craniosynostosis, it is helpful to know that our skulls are not made up of one single "bowl" of bone. Instead, different bones that fit together like a jigsaw puzzle make up the skull. The areas where the bones meet one another are called sutures. As a baby grows the brain rapidly increases in size. According to current theories of growth, the growing brain pushing on the bones of the skull causes the skull bones to expand or grow. When one of these sutures is fused too early, it is called craniosynostosis. There will be no growth in this area. This inability to grow in one area may lead to overgrowth in another area. This results in an abnormally shaped skull. taken directly from www.ccakids.com |
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Sydney's
Timeline Pictorial (Dad's Diary) |
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| 1 week before surgery |  |
| 1 day before surgery 1/26/03 |
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| 1 hour before surgery 1/27/03 |
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| 1 hour after surgery 1/27/03 - 3:00 pm |
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| About 7 hours
after surgery 1/28/03 9:00 pm |
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| 1 day after surgery in between dressings |
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| Almost 2 days after surgery height of her swelling |
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| Dad's note: 1/29/03 - 11:00 am 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). |
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| 2 days after surgery actual height of swelling |
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| 3 days after surgery Most lines out, looking better |
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| 4 days after surgery There's our Popeye |
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| 4th day (Friday) after surgery Going home |
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| 1st full day at home 1/31/03 |
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| Getting fitted for her helmet For basic protection only. This will not have to be worn at all times, as it is not for re-shaping the head |
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| Dad's note: 1/31/03 -
10:00 pm
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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| Sydney, 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 |
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| 1 - 2 Months after surgery (Mar '03) |    |
| 3-4 Months after surgery (May-June '03) wearing herself out |
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| June '03 couldn't ask for a more perfect face! |
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| July '03 into the wild green yonder |
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| July '03 into the wild blue yonder (on a plane) |
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| Dad's note: 8/17/03 -
10:00 pm
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. |
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| Summer '05 |
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