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View Full Version : hi - cranio baby from canada here



carrielulu
08-29-2007, 01:35 PM
hi everyone...my baby hayleigh is almost 2 months old and will be getting cranio surgery on october 3rd. im so excited and sad at the same time...she was has 3 sutures fused - saggital, coronal and lamboid. most of the doctors think that she has a syndrome attatched to it because usually 2 or more sutures fused is syndomatic, as well as her baby toe is webbed. however they have no proof of anything syndromatic and dont even know what it would be if it were, and i truly do not think it is. i pray its not. we have to travel to edmonton, ab to get her surgery as they arent specialized here and cannot do the helmet thing here either. i really hope to get to know you all and share experiences...im really nervous, have lots of concerns, etc. so i know this will be a comforting place for me. thanks, chelsea.

Janet
08-29-2007, 03:37 PM
Hi Chelsea!!! Welcome to cranio kids!!! I live in Mississauga, Ontario, my daughter Fiona is having surgery for metopic next month at The Hospital for Sick Children in Toronto, I have found soooooo much comfort in this site, everyone here is wonderful and will help you whenever you have questions or concerns.

charliesmummy
08-29-2007, 04:51 PM
:welcome
Hi Chelsea, welcome to Craniokids.
This site is fantastic as im sure your about to find out.
Good luck with your daughters surgery, my little boy is being operated on next week x

amommy22
08-29-2007, 07:12 PM
This is an awsome group, you will love being a part of it! Those days when you feel like no one understands completely and you post all your frustrations, someone will get on and respond totally validatating your feelings and make you feels so much better about your concerns and worries! Welcome to the group!!

Candice
08-29-2007, 09:08 PM
Welcome Chelsea!! You should definately get a hold of Isaac's Momma, I'm not sure if you saw her post, but her son's case of Cranio is very similar to Hayleigh's, hopefully she'll read your post as well, she was looking for someone going through this with multiple sutures. Welcome again to the site, it's an AMAZING source of support, as many others have stated. :hugg

:welcome3

Elizabeth
08-29-2007, 09:34 PM
Hi, Chelsea...welcome! I am new here, too, but yes, I was looking for people with multiple fusions. My little guy is just a month old and has 4 sutures fused...saggital, right lamboid, and left and right coronal. We don't have surgery scheduled yet...in fact, we are waiting to hear our appointment dates for the plastic surgeon and geneticist. The neurosurgeon seems to think that his case may be syndromic as well.

I don't know how much help I can be with you, as it seems we aren't in a whole lot different stages of this process (although you do seem to be a little further along that we are!) but I will be any support that I can!

Have courage...and I will keep you and little Hayleigh in my prayers! Oh yeah, put up a picture of Hayleigh so we can see her lovely little face, if you can!

Elizabeth

jenniferh
08-29-2007, 09:53 PM
WELCOME CHELSEA!-I'm so glad you found this site. You will find much comfort and support here. Sending many prayers your way!!

Candice
08-30-2007, 01:09 AM
:cheer Woohoo!!! I knew you would find each other!!:icon_mrgr

mayashekhina
08-30-2007, 01:26 AM
Hi and welcome chelsea, Im wondering have they done any blood testing yet such as Fish etc to get a chromosome count and ensure theres no additions or deletions etc?

frankiesmom
08-30-2007, 09:55 AM
Hi Chelsea,

Welcome. the best info I can give is find drs you trust, keep asking questions and go with your gut. Kids are strong, parents are not. Hang in there, it's a long journey, you will learn alot about yourself and hayleigh.
Lots of hugs.

Jennifer
08-30-2007, 12:27 PM
Welcome to the group! I'm glad you've found us and am pretty positive we will be able to offer support! There are quite a few moms from Canada who may be able to help w/ hospital info. You've met Elizabeth- I'm sure you two will have storie to share w/ multiple sutures fused. Also- the board creator- Katie- her son Dillon had multiple sutures fused.....
Again welcome!

carrielulu
09-10-2007, 12:15 AM
hi!! wow thanks what a great bunch!!!! thank u thank u thank u !!

jessbee78
09-12-2007, 06:54 AM
Nice to meet you Chelsea! Everyone here is wondeful! Your daughter is gorgeous!

Candice
09-13-2007, 01:57 AM
I keep forgetting when I've replied to your other post that I love the pic you're using as your avatar. Hayleigh is a beautiful little girl, what a cute smile! Love it! I love seeing pictures of all of our awesome, beautiful, AMAZING cranio babies!