View Full Version : SO glad I found you!!
08-05-2006, 05:58 PM
I cannot tell you how glad I am to find ALL OF THIS (so many cranio moms – one website!!)!!! I am new to this forum! I have a 9 mos old with sagittal craniosynostosis and minor hydrocephaly.
He is the dearest boy (to me:adore ). But his little life is not what I had imagined it would be. Now I worry about this kid’s chance for normalcy. So many have it so much worse then we do…but that doesn’t seem to change my anguish.
I am SO glad to have found this forum. Finally, I have found people willing to share great stories and experiences!!
I will keep on reading! Thank you!!
08-05-2006, 06:10 PM
I remember one of the things that weighed heavily on my mind was weather or not Dillon would be able to have that sense of normalcy. What I have found is that most cranio kids do indeed go on to live completely normal and functional lives. Those first few years can be tough, but it just makes stronger little people out of them (and us).
I bet your little man is just adorable! Does he have a surgery date set yet? We'd love to see photos of him. You can post here or in the family photo forum (I'll give you access)
Again, welcome! We look forward ot getting to know you!
08-05-2006, 11:35 PM
Welcome! I'm also glad you found us! I found this site to be a huge source of information, but more importantly support to me while going through the experience......I believe it's what kept me sane! Please take your time to look around. Ask all you want. I'd love to see pictures of your little guy.....
08-06-2006, 07:53 PM
Welcome..this is a great place and everyone is so wonderful. We are glad you found us. I don't what I would do without it! Please keep us up to date. He will be just fine. Trust me we know what you are going through. I will pray for you and your little guy. Please post some pictures!
08-07-2006, 11:29 AM
Welcome to the site. I am glad that you found us. My son Zachary was diagnosed with sagittal at 3 1/2 months and had his sugery a month later. We are very happy with the results. When you have a moment, we all would love to see pictures.
08-07-2006, 02:56 PM
What a great forum!! Hearing of everyone's experiences is so comforting!
Joseph was born Oct 15, 2005. By the time he was 5 weeks his pediatrician referred him to a ns at Johns Hopkins because his head circumference was growing too rapidly in relation to the rest of him. At 8 weeks he was diagnosed with sagittal cranio. Just before turning 3 months he had multiple strip craniectomy surgery on Jan 9, 2006. At 5 months the frontal bossing seemed pronounced again and he was extremely irritable. A CT showed that he had minor hydrocephaly. His ns was not concerned and wanted to take the wait-and-see approach. That seemed to be the right course of action. Within the last 3 months Joseph has hit a ton of milestones and seems to be on track. His mood has brightened and his head has become rounder again. We will be seeing his ns again this month for follow-up.
What surprises me is how quickly his head changes from week to week. I think it is his facial features that change only slightly but it seems noticeable to me. Do you find that with your kids?
Here is a recent picture of Joseph at the beach this July. He is as happy as a clam!
08-07-2006, 07:09 PM
He is such a cutie!!
08-07-2006, 10:19 PM
Hello and welcome...First off...he is absolutely adorable!!!
We all have different stories and experiences to share. My son was Metopic. You will definetely find great support here, even as our cranio babies grow older. Welcome again and please feel free to ask any questions.
Powered by vBulletin® Version 4.1.4 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.