Julia’s Craniosynostosis Journey

Pics Of Julia Before And After Her Craniotomy

Immediately after surgery with drainage tube

Julia immediately after surgery 4/16/2009

catheter-iv-in-both-arms-and-one-leg-drainage-tube-and-head-wrap

catheter, iv in both arms and one leg, drainage tube and head wrap

i-can-still-hold-pooh

Trying to work around my bandaged hands

You can see the bump clearly in this pic

At Caelinn Ford's 1st birthday 7/18/09

With Daddy On Father's Day

With Daddy And Grandpa On Father’s Day 2009. 2 Months Post Op

  • With Mommy On The Swings
  • With Mommy On The Swing One Week Post Op
What are you idiots up to? Julia before surgery

What are you idiots up to? Julia before immediately before surgery

Prior to Surgery. Crooked nose, mouth open but still cute!

Pre-surgery. The right side of her face is longer than the left, her nose is crooked so she had to leave her mouth open all the time to breathe.

with-daddy's-base-ball-cap-

The first of her two helmets.

On The Playground At Day Care 6/22/2011.

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9 Responses to "Pics Of Julia Before And After Her Craniotomy"

Julia Gulia is looking great!

She’s absolutely adorable, Cathy.

Julia is beautiful! Thanks again for all you have done!

what a wonderful daughter you have and very pretty,my grandson is going through the same operation tomorrow and i am so worried may he come through and look as good as your daughter, give her a big hug from me x

Thank you so much Diane! What a lovely thing to say. Where is your grandson having the surgery done? Have you heard of the Jorge Posada Foundation? I am a volunteer for them. They donate money to hospitals across the country that perform surgery for Craniosynostosis. They also have a mentor program if your son/daughter would be interested. I know the surgery is tomorrow but I thought I’d mention it in case it was helpful. Here is there website:

http://www.jorgeposadafoundation.org

hi again yes i think myself and my daughter would be interested i will show her the link when they come home, logans operation went well,he has a drain in the back of his skull draining the excess blood as he has had to have a blood transfusion and it looks like he will have to have another transfusion,he is in great ormand street hospital London so i have every confidence he is in the best hands,i hope the worst is over.
looking at your pictures logans head was more severe but hopefully he will have excellent results and look as pretty as Julia. i will look at the web site now, its just nice to talk to someone that has been through this.
thank you x

Hi Diane,

Glad to hear everything went well. Which of his sutures closed? We try to match people up by location as well as other criteria. Since you are in London I imagine they will find someone who dealt with the same suture. I don’t think we have any mentors in the U.K. but I may be wrong. Maybe your daughter could be the first! :)

Here are some things that my brother, who is a dr and my pediatrician told me that made me feel better:

1) If you are going to have brain surgery this is the one you want to have. They do not operate on the brain. Only on the skull. The neurosurgeon has to be there because the brain gets exposed during the surgery but it does not get touched. (I know…it’s a disturbing visual)

2) This does not affect their personality or intelligence unless it’s not caught in time. Then pressure can be put on the brain but in your grandson’s case it is a mechanical problem.

3) There are 3 levels of surgery. Level 3 being the least invasive. Getting your eyes corrected or a mole removed would be an example. Level 1 being the most invasive. Anything on a major organ would be an example of that. So this is a level 2. It’s serious but there are worse things out there as I’m sure you’ve seen from being in the hospital. When Julia was in the hospital there were kids in there with conditions they would never recover from. It just gives you some perspective.

She might also consider joining CAPPSKIDS and the Posada Foundation on Facebook. A lot of parents post questions that may be pertinent.

The before pictures of Julia are so familiar. She looks so much like my Julia. Love the pictures and love that little girl (even if she is obsessed with Spiderman)

Thanks Angie! Always love responses to my blog

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