Friday, September 6, 2013

Life in a Helmet

So...the first few weeks in the helmet were a little rough for Alice and a little hard for me as well. She had a hard time sleeping...I had a hard time adjusting. I would plan her hour out of the helmet around our outings, sometimes pushing that hour to two hours...which was only hurting her in the fact that she will be in the helmet for a longer time period. I had children ask me "what's wrong with her"...and grown ups ask me what the helmet was for...others come up to me telling me that their child had to wear a helmet too (but for different reasons, for positioning/flattening) and even ran into someone who's child has Craniosynostosis. I ordered decals for her helmet and starting using her helmet as a billboard to educate others. The majority of people are too scared to ask and will just tell us how cute she is but just don't know how to ask why she is wearing the helmet. So I figured by putting the blog info and a facebook Alice in Cranioland logo on there, people in this day in age could just pull it up and find out. Lately I have just been telling people as soon as they approach us, which is pretty often when we are out. I have enjoyed educating people and giving them a summary of what Craniosynostosis is and the options available for treatment and how we had to push for her endoscopic surgery. The reaction to what I tell them is heart restores my faith in humanity...seeing their genuine concern and how happy they are that she was able to get the less invasive surgery. I see pregnant women look at her and her helmet and hope that it educates them so they will look at their child's head and not be naive as I was, thinking it was from childbirth. If I had only known, Alice could have been helped sooner, which wouldn't have affected her facial structure very much and we wouldn't have had to "fight" for the endoscopic surgery since she missed the typical window for that, which is 3 months old or younger. I am so grateful and hopeful that she is on the other side of this. At Alice's last helmet adjustment the doctor thought she looked great already and felt that in his opinion she may not be in the helmet as long as originally stated by the neuro doctor. Overall, Alice has adapted amazingly well to the helmet. It seems like I was worried for no reason. We will see what he says in a couple weeks when we head back to Maryland for another post op. Thanks so much for all of your support for really means alot to us. We will update the blog after we see Dr Magge.

Almost 7 weeks into helmet therapy