Tuesday, May 31, 2016

The mind of a Cranio Parent

It is such a whirlwind of emotions, this whole cranio journey. It's hard to believe it's almost been 3 years since I first heard the word CRANIOSYNOSTOSIS. In the moment it felt like my world stood still. I still get teary eyed thinking about everything that Alice went through and the emotions that I experienced the first year of Alice's life....anger, fear, joy, happiness...geesh it was quite a journey!!

Cranio has changed me as a person...for one, I will never be able to just admire a baby anymore and say "awhhh"...I will inspect EVERY baby head, child head and even adult head. (it comes w the territory lol) You too will become a 'head picker' through this journey...

Another thing that will probably never go away, is how much you worry about your cranio baby. It does not matter what surgery they have or anything...you WILL worry your heart out. This is normal. Even almost 3 years later, I worry, not quite as much as I did in the beginning, but I do. You'll worry about your baby's head, appearance...everything. Just remember YOU are doing everything you can to make your child 'better'. Surgery is necessary to correct this condition. (except for some metopic cases)

The thing we loved about endoscopic surgery is that we didn't have to wait. The Doctor released that suture and instantly, her brain had the room in needed to grow. That was why we pushed so hard for endo...I just wanted her problem treated as simply and as quickly as possible. The idea of a cut in her skull VS a reconstruction of the skull sat better with me. The skull is essentially how it should have been at birth, and the skull and brain can grow as it should.

Here is miss Alice being so proud of her new haircut! (her 1st haircut was by the neurosurgeon)



She'll be 3 years post op on July 12
We couldn't be happier with our decision of endoscopic




Tuesday, May 24, 2016

Craniosynostosis Endoscopic Surgery Support Group

Please join this group and post any questions or stories about Endoscopic Surgery for Craniosynostosis. Hoping to help others just starting this journey with Craniosynostosis

https://www.facebook.com/groups/523481684505643/



Friday, January 29, 2016

She really has come so far...



Our sweet Alice turned 3 years old today. I thought I would post a comparison picture to celebrate how far she's come in 2 and a half years. She had endoscopic surgery for left coronal (unicoronal) craniosynostosis when she was 5 months old.




I noticed her asymmetry at birth and I kick myself for not following my gut feeling and getting it checked out sooner. I convinced myself not to worry and that it was just from the birthing process. Thank goodness it was caught in time...it was caught just barely in time for her to be a candidate for the endoscopic surgery. Moral of the story is to always follow your gut feeling!

Wednesday, September 2, 2015

Photo timeline of Alice's journey

I thought I would post some before and after pictures of Alice through her cranio journey for new visitors to this site to see. She had endoscopic surgery for left coronal craniosynostosis at 5 and a half months old. She wore a helmet from Hanger for 1 year (she went through 2 helmets in that time). She is now a little over 2 years post op and doing great!


1 day old

5 days before surgery

recovery room
1 day after surgery
4 days after surgery
1 month into helmet therapy


6 months into helmet therapy

2 months before helmet graduation
1 year post op, all done with the helmet
6 months post helmet
almost 2 years post op

Sunday, July 12, 2015

2 years post op!

Happy 2nd Cranioversary Alice!


                                                   
I can hardly believe it's been two years since this sweet girl underwent skull surgery. It was the scariest and most emotional thing I have ever had to do, handing my 5 month old daughter over for surgery. The strength she showed me as a baby was truly remarkable. She was smiling less than 24 hours after having a piece of her skull removed. She has come so far in two years! She will be followed by her neurosurgeon for years to come to make sure her skull is growing the way it should be. We are so thankful her Craniosynostosis was caught in time to have the endoscopic surgery option! She is doing wonderful and I would definitely choose this option again if I had to do it over.



Here's the link to my blog about her surgery.
http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html




Wednesday, February 4, 2015

Alice's 2nd Birthday & Neurosurgeon Followup



Happy 2nd Birthday Alice!


I can't believe our baby is 2! She has brought us so much joy over the past 2 years. She has truly blessed our family. Alice had a wonderful time celebrating! She had so much fun at the Children's Museum...and she loved her Frozen cake!









We followed up with Dr Magge this week. Overall, he think she looks great and has no immediate concerns. He thought she had made great progress and said she would continue to progress over the next few years. He reminded us that since she was on the older side for endoscopic surgery that her results may not be as good as a younger baby, which we knew going in, but we chose to go with the least invasive option possible, that was really important to us. We didn't want her going through a larger surgery when her medical concerns could be treated with the endoscopic surgery. He thought her facial asymmetry looked great and had improved a great deal. He said that is not something you get with the larger CVR surgery. Those babies may not have a flat spot on their forehead, but their nose and mouth cannot be corrected in that surgery. We did realize that and I am glad that we chose this option...I feel that it prevented further asymmetry of her face and also "stopped craniosynostosis in it's tracks" as a friend put it. 

Dr Magge told us that he will followup with us again in 6 months and track her growth and her progress. He had no concerns this week and felt that there was enough room for her brain to grow...but that it something he will continue to watch and monitor for MANY years to come. Signs for us to look out for would be headaches, restlessness, irritability, etc....signs that would point to pressure on her brain. Things he is looking for is progressive growth of her skull. He takes many different angles of measurements. If at any times she stops progressing or growing at a normal rate, that would be a reason for concern. We don't anticipate this happening and praying she will be in the clear of more surgery. However, we are very glad he is monitoring her so well. 

As always, if anyone that has stumbled across this site and is looking for more information or would like to talk to me about Alice's journey, please feel free to email me at AliceinCranioland@gmail.com or contact me at www.facebook.com/AliceinCranioland.


One of her favorite gifts











Monday, September 8, 2014

Neurosurgeon Followup, after helmet

Alice had a followup appointment with Dr Magge today in DC. It was her first time seeing him since coming out of the helmet. It was a pretty horrible drive there in the rain and Alice was not herself....including in the room with Dr Magge. She's at the age where's she's scared of everything...and she DID NOT want anyone touching her besides her family.




Dr Magge thought she looked pretty good. He took head measurements and she had a little head growth since our last appt in June. He could also feel the bone bridging over the gap where he did the strip craniectomy. Which basically means its growing back together. He asked us if there were any concerns with her developmentally or her complaining of headaches or holding her head...and we said no. These things would be signs of pressure on her brain.

He told us that he would be following her for many years after surgery. He also said that just because she had surgery it doesn't mean she is cured of Craniosynostosis. It's something he will have to watch and monitor.

Praying that everything will be ok and that there will be plenty of room for her brain to grow. We will followup with him in 6 months.


waiting to see Dr Magge

September is Craniofacial acceptance month. Please share Alice's story to help us raise awareness. Thank you.