Friday, August 9, 2013

Alice in Cranioland Video

Here is a video I made about Alice's Craniosynostosis Journey. Please help us raise awareness by sharing this video. The earlier Craniosynostosis is caught the sooner these sweet babies can be treated. Parents need to know that there are doctors out there that will do the endoscopic surgery past 3 months of age. We hope our story helps to get that information out there.

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!

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