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01-14-2007, 05:38 PM
Hi all. I just wanted to introduce myself. I am the proud mommy of almost 4 month old twin boys! They were born 3 months early so they basically look, feel, and act like 1 month olds! We've had them home from the NICU (after a long 10 week stay) for a little over a month now and we're loving every minute (except the 3am crying fits).
Anyway, one of my boys has saggital craniosynostosis. We saw Dr. Carson at Hopkins and are going to have it surgically corrected in March. I don't know if anyone else is in a similar situation with twins but I'm just having such a hard time with people comparing them. Taran (the baby with the cranio) has a typical long and narrow head because it is saggital. Nathaniel is a gerber baby and his head is perfectly round. I wish people wouldn't compare. I'm already heartbroken that this poor little guy has to go through surgery. Why are people so focused on appearances? Everything else about them is similar as far as size, development, etc etc. I guess it makes it worse when there's a sibling for comparison who is the exact same age but they are fraternal and look nothing alike regardless.
Anyway, that's my story. I joined this forum looking to get to know people in similar situations with craniosynostosis. I had a high risk pregnancy and I know the support group I joined online for that was invaluable and I'm hoping this will prove to be the same!
01-14-2007, 07:52 PM
My little one isn't a twin, but we've got the cranio too!! (coronal, not sagittal) :adore
It is so hard when they compare, I understand that, we're here to support you in any way you need, we've Been there done that, or going through the same thing. Any questions you have, please feel free, I found this forum invaluable as well when we went through our surgery. Sometimes I felt like we were the only ones in the world going through this, and without a computer and this forum, we would have been.
Good luck and let us know more about your situation, do you have a date set? And again, feel free to ask away if you have any questions relating to the surgery or post op!
01-14-2007, 09:38 PM
i think i would have had a nervous breakdown if it wasn't for this site.
the information and support are outstanding.
my son just had surgery in november and he's healing well.
we're here for you!
01-14-2007, 10:17 PM
Welcome! Wow- twins--how fun! (probably tiring also?:giggle) I'm glad they are both doing well developmentally. I'm sorry they are being compared. I suppose that's just human nature? It's weird that people will point it out though- especially since they're faternal???
I'm glad you've found us! Ask away...vent away...share your proud moments...we're here for it all! :welcome
01-16-2007, 02:42 PM
:hugg :hugg I know how you feel, people in this world can be so ignorant! But it's moms like us who cahnge the world! I welcome you to craniokids, and believe me everyone here is amazing, like second family.
I have 5 kids and my 4 year old Matthew had sagittal and both of my sons have autism, so I understand even though Matts surgery corrected the shape he has a scar and autistic features and people say and do stupid things sometimes but Matthew can always show them how special he is. Just always remember the good things about your babies and nevermind what everyone else says.
01-16-2007, 06:30 PM
Well said Josette, and I can't think of anything that isn't a good thing about all my babies, so if we all did that, nothing but good thoughts eh? :hugg
01-16-2007, 11:51 PM
Welcome to CK! I'm glad you found us, we have a wonderful and caring group here.
I remember wanting to reach out and smack some people for the way they would look at Dillon before his surgery. I'm sorry the boys are being compared like that :hugg I began to realize that people just didn't understand why he was different and if I caught someone staring I would find a polite way to call them on it and explain what craniosynostosis was. It made me angry that he was being looked at differently, but I used the opportunity to spread cranio awareness. :hugg
01-17-2007, 12:58 PM
I don't know if you go on cappskids.org, but I know there is a lady there that has twins. One is a boy and one a girl. Her daughter has coronal cs. Her daughters name is Ella. You might want to look her up.
Thanks for sharing your story. I hope the best for you.
01-19-2007, 03:37 PM
Welcome! I am sure you will find great support here. I know I have. It is so frustrating when people make comments and compare. I can only imagine how comparisons are frequent amongst twins. ((HUGS)) to you and I am glad you found us.
01-19-2007, 09:54 PM
Thanks for the support guys! It's just been stressful. We have a tentative surgery date of March 5 but we're trying to combine that surgery with a surgery for an undescended testicle (oh so minor but why put the guy under anesthesia twice if he doesn't need it). So we'll see if the urologist is available that day and if not the date will get changed by a day or two! I'll keep everyone posted!
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