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Thread: Post Surgery newbie question

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    Default Post Surgery newbie question

    Hey everyone. I really like the site and great advice. I've been reading for abit, I had a hard time starting a post. So now that I have. My daughter is 9months and is going for the surgery soon. We recently found out and it's been a crazy couple of weeks, most days I'm ok but sometimes it's too much. We don't have a date yet, which makes it worse so I'm trying to keep my mind busy with planing details. I want to know what you guys did after you got home to keep their head covered when outside in the sun. Can they wear sun hats or bandanas? As anyone been advised for or against bandanas? How long does it take for the hair to cover it?

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    Melissa is just starting out Melissa's Avatar
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    Hats or bandanas should be fine - we were never told any restrictions other than to keep the sun off the exposed skin and to make sure that whatever covering we chose didn't adhere to the incision itself. Bryson wore baseball caps after his surgeries, and sometimes the cloth would touch the incision, so I started putting light layers of gauze with a thin coating of Vaseline over the parts where the hat touched, just to make sure that it didn't stick. It wasn't enough to bother the incision, but was enough to avoid problems with pulling off any scabs with the cap...
    Melissa, mom of Bryson (w/Pfeiffer Syndrome), age 14, and Zack, age 11.

    Bryson's page: http://BrysonsStory.tripod.com

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    Lori is just starting out Lori's Avatar
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    Welcome to the site!

    Mom To Many,

    Mom & Grandmom to Sagittal Craniosynostosis Angel Babies


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    mom2mykidos3 is just starting out mom2mykidos3's Avatar
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    I put Miriam in hats all the time. I didn't want people to look at her and think the worse like, brain tumor or something. I was never told that there were any restrictions either.
    I understand just wanting to know everything. I was the same way, it is a way to keep your mind from wandering in places where you don't want it too. I also moved Miriam's crib in my room for the first 2 weeks. I raised the head of her crib and then rolled blankets around her and under her bottom to keep her head elavated.
    It didn't take very long for her hair to come back. I wish you the best. My only advice and comfort is to tell you that what you are feeling we have all felt.
    Heather mommy to Miriam (03.24.2006) FOA and CVR on October 6, 2006 Left Eye strabismus surgery, Dec. 20, 2006. Right eye strabismus surgery, July 27, 2007. Both eye strabismus surgery March 29, 2008. Touch Up sugery done at Primary Children's in SLC, Utah 01/04/2011.

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    SunnieFaerie is just starting out SunnieFaerie's Avatar
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    Hi back atcha. Jackson had his surgery the day before Valentine's last year. So it was still chilly. His head wasn't shaved so his hair, and he's always had A LOT, covered the incision area.

    Don't be ashamed of the surgery. This is just a battle scar and so far she's winning the war. Jackson did wear a helmet for 9 months and only one person ever came up to me making a comment without asking about the helmet. Her comment was, "Oh you have a head banger too?" I was honest and told her why he had to wear the helmet. Everyone else was open and honest enough to ask politely about the helmet. I don't remember anyone ever making a disparaging remark. And if they did, they quickly regretted it.

    While I don't like that Jackson had to go through all of this, I am not ashamed and quickly made sure others who had negative comments felt ashamed instead.

    We all do what we can to help our children. Anyone who makes negative comments, has never gone through what we've all gone through.

    So if there are no restrictions, let your daughter wear her scar proudly. When people ask questions, it's our chance to educate them on something most of us had never heard of until it happened to us.

    Good luck with your daughter's surgery. I will keep her in my prayers. Please keep us informed on her recovery.
    Sunnie
    Mama to 3 Men and a Little Lady
    Jay, Justin, Korinne and Jackson,
    who was born with congenital diaphragmatic hernia and craniosynostosis.
    In Loving Memory of
    Pheobe Grace and Audrey Grace
    8/13/04-8/13/04

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    Administrator Jennifer has a spectacular aura about Jennifer has a spectacular aura about Jennifer has a spectacular aura about Jennifer's Avatar
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    Sunnie- I agree. I bought hats for Emily pre-surgery- so I could cover her stitches.....post surgery, they didn't show as much as I thought- but then I found myself proud of her stitches and I wanted people to see them and ask about them.. As much as they went through- people should know!
    Jennifer
    Mom to- Sarah(13), Reese(10), Emily (8.5) & Cody (3)
    Emily diagnosed w/ Rt. Coronal Cranio corrected in '04 w/ Dr. Wehby in Portland, OR

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    Melissa is just starting out Melissa's Avatar
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    A note about the scar....Bryson is now 14 1/2, and his doc told him that when he's 16-17 he can remove the scar that runs from ear to ear. Bryson's is pretty wide (over 1/2", closer to 1") because of all the operations he's had where they went in through the same spot. Anyway, he told me yesterday that he thinks he wants to just leave the scar...he said that it is a part of him and a part of who he is and he's thinking of keeping it. I told him it's his choice and that if he changes his mind, it's something that can be done pretty much at any point in his life, so it's no big deal at all. Anyway - just thought you guys might want to here about the scars from an older child's viewpoint... :)
    Melissa, mom of Bryson (w/Pfeiffer Syndrome), age 14, and Zack, age 11.

    Bryson's page: http://BrysonsStory.tripod.com

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    Matthews Mommy is just starting out Matthews Mommy's Avatar
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    I agree with Jen, I too am a proud mommy and thought I did not care to hide or cover the scar unless it was windy or cold I never really worried about the sun. My husband wanted to hide it because people stare but I want Matthew to love himself for who he is and what he has faced, his scar shows a brave, strong boy who made it through a major surgery victoriously. I shave his hair very short in the summer and people always think it's a hairstyle...LOL! My son will say it's my scar I had surgery when I was a baby...he's still a baby to me :icon_mrgr . Anyhow I really don't think sun exposure should be a worry maybe when it heals some sunblock if it's still exposed...(Matt's never got sunburned) but you never know with the sun.
    Josette


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    plukids is just starting out plukids's Avatar
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    Welcome. The first couple of weeks I really left it pretty open and uncovered so that nothing would stick to the area. I kept thinking that with the incision so fresh it "might" be bothersome to her to put something on it. After that point we would wear hats, head scarves or headbands for fun. I then came to realize that when people noticed her scar she was happy to show them and it gave me a chance to educate others on cranio. Now I find myself not caring if the scar shows or not. It almost always is noticeable when we put her hair up. It's a part of Sylvie and we love her scar. **I think Vance (on CK) had a cute shirt that said "Chicks dig scars!" I thought that was so cute!
    Lisa - Mother to 3 men and a little lady
    Anthony 10-08-1997, Frank 06-29-2000, Casimir 1-31-2003, & Sylvia 09-14-2004 (Left coronal & metopic craniosynostosis CVR/FOA 09-07-2005)

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