laurensmom

[Jennifer]

:welcome to Craniokids! I'm glad you found us. Please look around. Ask all the question you want......If you get a moment, I would love to hear more about your story. :colors

[verdon2]

:icon_mrgr Hello and :colors ! Hope to get to know you....:wink

[Katie]

Welcome, we look forward to meeting you!

[laurensmom]

Hi, THANK YOU SOO MUCH for the warm welcome! My name is Denise and my daughter was just diagnosed with craniosyntosis at CHOP. The doctors around where I live did not catch this and was treating Lauren (my daughter who is 21 months) for ocular nerve palsy. She is getting surgery on August 14 and I was wondering how long the surgery lasts. We are a mess since the diagnosis because we have been saying for sometime that something wasn't right. It was especially noticeable when we look in the mirror. I have a couple of questions is anyone could answer it.

1. How long is a typical surgery...she has only the right side to get done.
2. Will she need more eye surgery when she is done. Her right eye is wondering again.
3. How is she going to be after the surgery..a day, a week, a month.

Thank you so much!

[Jennifer]

Denise- again Welcome. Is it the coronal suture that is fused (I only asked as you mentioned one side and the eye). Our surgery- we handed her over at about 7:30 am and got to see her at 1:30.....Doctors came out at 1 to say they were done and she was in recover. That was the full surgery. She had a followup surgery and went back at about noon and they came back at 3:30 to say they were done. That only had some reshaping of the eye socket.

Eye surgery- can't help there...sorry. I'm sure some of the moms can though/

She will amaze you. As an infant- Emily was pretty much out of it the first 3 days. Day 4 we went home and she was pretty okay. Day 7 she was back to her smiley self. Her second surgery she was 22 months. She was eating by that evening and we went home the next day as she was so antsy and didn't want to stay hooked up to anything. Day 3 her eyes swoll shut but she was still trying to run around. They are such troopers. I believe it is harder on us than it is on them....... :hugg

[craniomommynbaby]

Welcome to the board!
My son had both coronal sutures fused and no eye problems, but the surgery was a similar length of time. They took him back at 8:30 a.m., and they were finished and wheeling him to PICU around 2:30 p.m. We went in to see him a little after 3:30 p.m.
How she will be afterwards may be different since she is older. Simon had surgery on June 29 and came home on July 2. He was playing in his Exersaucer on July 3. He had trouble sleeping for about 2 months total. It was like having a newborn all over again for about 2 weeks, and then we found that he needed a night light to ease him into his own room again. Sometimes the anesthesia throws off their schedules.
Feel free to check out our site in my siggy, and again welcome.

[laurensmom]

Thanks again for all your support...this board is amazing and it really helps to know you are not the only one going through it. I'm not sure of her actual diagnosis. When we got the news I started crying hysterically and I just couldn't hear or process anything that was being said. She is in a study group they are doing to try to see why this happens. They are taking my DNA as well to see if it was hereditary. I asked for a letter explaining everything since I wasn't in a good state of mind and I haven't received it yet. We go back on June 22 to meet the surgeons and have her tested to see if she shows signs of developmental problems since this was caught so late.

But again thank you guys so much for the warm welcome and all the information. This site is extraordinary!

[Jennifer]

I'm glad we can help. I'd just keep writing down all questions you have (as you always seem to forget when you get into the office??). That way when you go in, you can just go down the list and ask. We have a section here with a list of questions that may help you......

[KALEMSMOM]

Hi Denise,

Welcome to craniokids. this site and all the wonderful moms have helped tremendously through the cranio journey. My son was metopic. he had surgery at 9 months and is doing wonderful.
To answer a few of your questions:
1. How long is a typical surgery...she has only the right side to get done.
My son's surgery was 5 1/2hrs. They basically reconstructed from the eye sockets all the way to the top soft spot.
2. Will she need more eye surgery when she is done. Her right eye is wondering again.
My son's eyes seem perfect and we haven't had any problems so far.
3. How is she going to be after the surgery..a day, a week, a month.
She will surprise you on how strong she is. My son was in a lot of pain and needed quite a bit of morphine after surgery. He also had morphine for almost 2 weeks afterwards. I took almost 3 months to get him back to a regular sleeping schedule. It was a huge adjustment but in the end all worth the exhaustion. His little noggin looks wonderful.

Good luck, please ask any questions. These moms are all so wonderful in helping and are great support. Let us know how everything goes.

[Rhonda O]

Denise, welcome to the site. I'm so glad that you found us. My son Zachary's surgery lasted about 5 hours. He was released from the hospital on the morning of the 5th day. I was absolutely amazed with his recovery. He was totally off of his pain medicine about a week after surgery, I believe, and he was back to his normal happy self.

[Matthews Mommy]

:welcome My son had his surgery at the neuroscience institute at JFK in Edison NJ. His surgery was about 5 hours and he did not need alot of blood. His stay was 4 days, he needed limited treatment. 2 days PICU, 2 days Pediatrics. I know how scary this all is, I never forget how I felt that day. I can tell you that the minute I saw him after it all I was so relieved and I just knew he would be fine. We are all here for you, anytime...:hugg
Josette

[plukids]

Welcome Denise! Sorry this posting is coming late!! My daughter, Sylvie, had surgery for left coronal & metopic cranio. She was 1 week shy of her first birthday. She left my arms at 07:30 and at 10:25 the surgeons were debriefing us on surgery. She went in on a Wednesday morning and was released on Saturday evening. Sylvie needed a unit of blood which we direct donated for her (she received my blood). She had a complete CVR/FOA. If I can answer anything please don't hesitate to PM me!! Waiting is so hard!! ((((HUGS)))) to you! We are 9 months post op today and she is doing awesome. No one can tell unless I point out her scar. Children are amazing!! They are so strong. They lift us up!

[laurensmom]

Hello Everyone...Sorry I haven't been here lately..we got back from two week vacation to disney with Lauren:) She had a blast. Well Daddy tried downloading a video on my computer and crashed it so I had to wait to get it fixed. I hope everyone is doing well. Lauren goes for her CT Scan on July 18th (the day before my birthday) so wish us luck. I'll let you know how everything turns out.

Pray for us!!

Denise

[plukids]

Welcome back Denise! Sorry to hear about your computer!! I hope you had a great visit to Disney. Wow the 18th! Keep us posted and I'll keep praying for Lauren and your family!

[Matthews Mommy]

Welcome back, hope you had fun! Keep us posted.