https://www.youtube.com/watch?v=k6e-4k18zLc
On June 18th 2013, our soon to be 5 month old baby girl was diagnosed with Left Coronal Craniosynostosis. We were told she missed the window for having the smaller endoscopic surgery and that she would need a major reconstructive surgery of her skull around one year of age. We were determined to find a doctor who would still do the smaller surgery. This is documentation of our journey in hopes of helping others who are going through the same thing.
Friday, August 9, 2013
Alice in Cranioland Video
https://www.youtube.com/watch?v=k6e-4k18zLc
Wednesday, August 7, 2013
Coronal Craniosynostosis Info
Bird's eye view of Alice's skull before her surgery. You can see the right side has grown outward like it's supposed to and the left side that is fused is unable to grow outward. |
Helmet therapy is coming along. Alice has been such a good baby through all of this. She really has such a wonderful disposition about her. She had another helmet adjustment this week. Hanger is who we go to for the helmet. Daniel is wonderful...he really takes his time and makes sure the helmet is fitted correctly and that she is comfortable. He took measurements of her head yesterday and the left side of her head has grown outward 5mm since her first measurement before the surgery. So that's good news, it's moving outward like it's supposed to be and the right side of her head has pressure on it from the helmet to keep that side held back so the head can shape correctly. She will need a new helmet approximately every 3 months. She has helmet adjustments every 2 weeks...for up to 12-18 months.
Alice's first bite of baby food...she's not a fan! Like her facebook logo? :) |
Here are a couple links to short videos about about endoscopic treatment of Coronal Craniosynostosis and helmet therapy. Most doctors only do this endoscopic procedure up to 3 months of age. When we found out about Alice's diagnosis we were told we were outside of that window...but there are a few doctors out there that will push that window up to 5-6 months, which Alice barely fell into. We had to put alot of work into getting it approved but thankfully it worked out. Not everyone will benefit from the endoscopic procedure but thank goodness they were willing to give it a shot with Alice and we are hopeful! We are praying that she can avoid another surgery. So please keep those prayers coming!
https://www.youtube.com/watch?v=iR4ZReczojo
https://www.youtube.com/watch?v=N001zAeFOHk
Thursday, August 1, 2013
Thank You
I just wanted to take the time to thank my family and friends that brought us dinner and gave us gift cards when we got home from the hospital with Alice. It was so nice not to have to worry about dinner for a few days. Also thank so much to those of you that have sent things to Alice, I can't tell you how much we appreciate everything! Many of you have asked me if there was anything you could get Alice or if you could do anything to help. We are looking into a fundraiser in town to help with the ongoing medical bills for her multiple helmets and surgery/hospital bills. Thanks so much for your support and prayers and the many of you of you who reached out to us and offered to help us in any way.
Our three babies |
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