View Full Version : New here..don't know where to start
12-07-2007, 05:36 PM
I have a beautiful 6 month old daughter named Madison who was diagnosed with right coronal craniosynostosis and torticollis. My mom actually found this site and directed me to it. We had surgery first scheduled for last week. But when the plastic surgeon and the neurosurgeon spoke with each other about her, they decided that she was too young to have the surgery yet. So now she's scheduled for surgery Jan 30. It really stinks that we had to wait. I'm sure it will be better for her in the long run. But me and Daddy we're as prepared as I think we can get and then they have to change it around on us. We're just ready to get this surgery and recovery over with. Anyway, if anyone has any advice for us, we'd really appreciate whatever you can tell us and we'll keep looking around on here. Thanks for listening.
12-07-2007, 07:53 PM
Hello, and welcome to craniokids!! MY daughter and I are both bi-coronal. My daughter had a full cranial vault recon at exactly 5 months of age. Surgery really i the toughtest part of the whole journey, and thats exactly what it is, a journey.. You don't really know who you are and the things important to you until you have to deal with something like this. I also think it's a lot harder on us than it is on our little angels. You will be surprised at how quickly they recover. You will be getting a lot of information to absorb, so take it one day at a time. And if something doesn't feel right, stick to your gut. You're actually pretty lucky to make it this far so quickly, a lot of parents here have had some real battles with the doctors to even get them to diagnose. I don't know much about the tort, but my nephew has it, and his mom is on this site too, her name is Katie if you wish to talk about that. She's one of the members that actually came up with this wonderful site. I wish you the best, and you'll be over the hill in no time!
12-07-2007, 09:35 PM
Welcome. My daughter had right coronal and tort. The tort actually resolved itself after surgery! If you have any questions- just ask. You can add a post or send me a pm if you'd like. No question is to personal on this site, so don't hesitate- we're here to help!
I'm sorry it got postponed- I imagine that was hard having a date set and then it not happening.
12-07-2007, 10:47 PM
Welcome to Cranio Kids! Gosh, I can only imagine the frustration of having surgery postponed, I'm sorry that you all are going through it :hugg Dilllon does have tort, although mild compared to what it used to be since he's had PT for it and eye muscle surgery (some cases can be caused by visual problems). Is Madison in PT for the tort?
You've found a great place for support, we look forward to getting to know you :hugg
12-08-2007, 09:00 AM
Welcome! Isaac has tort also...PT for an hour a week (or as much as he can handle)...and right now his therapist is mostly focusing on the tort, although she is also working on other delays. Isaac is bicoronal, among other fusions. It seems like a lot of these coronal babies might also have tort!
12-08-2007, 04:25 PM
welcome to Cranio Kids im sorry to hear that surgery has been rescheduled it must be very frustrating for you all. My son had surgery for Metopic 13 weeks ago & he is doing fantastic. Please feel free to ask questions as there is always someone willing to help x
12-10-2007, 03:53 PM
Welcome to the site! It's such a great place to find support. I can't imagine having the surgery postponed, it would have sent me over the edge! My son had surgery 1 month ago for metopic, he's doing great! The waiting is hard, but our little ones are amazing and bounce back so fast!
Powered by vBulletin® Version 4.1.4 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.