re: Craniosynostosis Support/chat

Quoting Veganmama *HJM*:“ I haven't had the chance to upload all the photos I've taken of Cassidy throughout her surgery, but here is one of her 3 weeks post-op!”

she looks amazing!!!!!!!

we have a surgery date.
25th march. It was supposed to be feb but there is a little girl with ICP and she is fused at the front and back so she needs to go first  

Quoting Lisa ♥ [ebft.fbb]:“ we have a surgery date. 25th march. It was supposed to be feb but there is a little girl with ICP and she is fused at the front and back so she needs to go first  ”

Im glad they set a date for you. On March 13 we will be 1 yr post op!

Quoting Preston&Adam:“ Im glad they set a date for you. On March 13 we will be 1 yr post op! ”

oh yay!!
Im a bit sad because we wont be home for my daughters birthday. Other than that im just anxious to see him come out the otherside

Quoting Lisa ♥ [ebft.fbb]:“ oh yay!! Im a bit sad because we wont be home for my daughters birthday. Other than that im just anxious to see him come out the otherside”

Yea I get that, his surgery was 5 days after my b day and 15 days my other sons b day

im glad you showed me this. i dont know whats going on with my son at all really, they just sent me for an xray cause his head was flat in the back and didnt round out on its own. turns out the back is fine, his head is just naturally shaped somewhat flat, which s what i figured cause my uncle and grandpa had somewhat flat heads in the back. but they found that on the left side of the top of his head something was prematurely fused he said. so hes sending us to a childrens hospital to see a neurosurgeon. since you know more about this, from what ive wrote do you think you have any more info or could explain to me a little better what could be going on?

Quoting DANiELLE♥STEFAN:“ im glad you showed me this. i dont know whats going on with my son at all really, they just sent me for ... [snip!] ... this, from what ive wrote do you think you have any more info or could explain to me a little better what could be going on?”

This should help explain how the sutures work and which is which

Craniosynostosis:
Craniosynostosis is a medical word that means that one or more of the sutures of an infant's head have closed early (synostosis is the union of two or more bones to form a single bone). The sutures are the spaces between the bones that make up the skull. These sutures have each been given a name. See the picture below. Each of the skull bones also has a name and the fontanelles which are labelled on the diagram are known commonly as 'soft spots'.


I cant tell you if your sweetie will need an operation or not, The nuero will do that.
Try not to stress too much, almost all cranio babies have a wonderful outcome, they make it through operation just fine and recover amazingly fast.

I do know how you are feeling though, its scary and just a downright awful feeling.
As i said i am here if you need anything at all

My son has bilateral coronal synostosis and is going into surgery on April 2nd, he will be spending his first Easter in the hospital. He also has torticollis and will need physical therapy for that. I'm just looking for other mothers who have any advice or in sight, especially with what to expect. I haven't really reached out before and have been keeping my emotions to myself but as of late I can't sleep, eat, etc, so I'm thinking it's best to talk to someone.

Quoting misfit mama:“ My son has bilateral coronal synostosis and is going into surgery on April 2nd, he will be spending his ... [snip!] ... have been keeping my emotions to myself but as of late I can't sleep, eat, etc, so I'm thinking it's best to talk to someone.”

Im glad you decided to reach out, My son goes in for his metopic operation on the 25th, We are pretty scared.
There is another site full of cranio moms. www,craniokids.org
I hope everything goes well for your little man. We are all here for you

Quoting Lisa ♥ [bft.fbb]:“ Im glad you decided to reach out, My son goes in for his metopic operation on the 25th, We are pretty ... [snip!] ... another site full of cranio moms. www,craniokids.org I hope everything goes well for your little man. We are all here for you”

thank you for posting that site. we find out if he is going to need surgery on monday/

Quoting DANiELLE♥STEFAN:“ thank you for posting that site. we find out if he is going to need surgery on monday/”

Ill be thinking of you and Stefan. Let us know how he goes

Danielle good luck at Stefans appointment today.


We have surgery in 2 days. I am scared out of my mind

Quoting Lisa ♥ [bft.fbb]:“ Danielle good luck at Stefans appointment today. We have surgery in 2 days. I am scared out of my mind”

Good Luck with the surgery! It is tough at first while waiting, but it gets better fast. We are just over a year post op so if you need anything or have any questions feel free to ask me!

Quoting Lisa ♥ [bft.fbb]:“ Danielle good luck at Stefans appointment today. We have surgery in 2 days. I am scared out of my mind”

aww thank you mama. turns out the person reading his xrays was wrong, he just needs a helmet, nothing is fused. my prayers are with you. i somewhat know the feeling from thinking he was going to be having it, its so scary, but its really not as uncommon as i thought and babies recover amazing from it!

Quoting Preston&Adam:“ Good Luck with the surgery! It is tough at first while waiting, but it gets better fast. We are just over a year post op so if you need anything or have any questions feel free to ask me!”

Thank you