Thursday, July 25, 2013

The Helmet

So like I said in my previous post, I was emotional about the helmet at first...Jason wasn't too hot on it either. It's like, we fought real hard for this endoscopic surgery and we weren't really thinking ahead to the other challenges...we just knew we wanted Alice to have the less invasive surgery done. It took a pretty long time to get the helmet fitted properly...lots and lots of adjustments. Alice didn't seem phased by the helmet initially but now she is starting to pull on it and cry at times when she is uncomfortable or hot. The doctor did say that her body will adjust to the helmet in a few least there are vent  holes in it.

Alice Mary - 4 days after her surgery

Her first day in her helmet - 6 days after surgery

We're supposed to work her up gradually over a few days to wearing the helmet. (1 hr on 1 hr off, 2 hours on 1 hour off, 3 hrs on 1 hr off, and so on...) Have her take naps without it initially, then naps with it and then sleep in it overnight. (she slept in it for the second time last night) She is supposed to wear it a total of 23 hours a day! I really didn't think it would be that much and I will admit I needed to adjust to it and gradually work up to it myself. I hated that my baby's head was covered up, that I couldn't see her beautiful eyes very well and that I couldn't put hair bows on her anymore. I really don't care what people think when they see her in it but having to answer questions and stuff was hard. So I decided to order a decal for her helmet with the blog web address and will also be ordering extra stickers/cards to hand out so I can briefly explain it and then guide them to the site for more info. After all my whole point of creating this blog was to educate people about Craniosynostosis and help those going through this journey and let them know the steps we took to get our daughter's treatment. Of course I had to add a feminine touch to the helmet too! I have quite a few flowers and bows that I have applied velcro to so I can switch them out accordingly to match whatever she is wearing. I have faith that this helmet is going to help Miss Alice Mary and the endoscopic surgery was the best decision for her.  Alice has already been through so much in 6 months of life, more than most people go through over a period of years. I am praying that things go up from here...

Big sister Cassidy feeding Alice a bottle

Hanging out with her big brother Trevor

Taking a nap with Daddy

Pink flower :)

Alice with her Care Package from Cranio Care Bears

Alice with her headband from Cranio Angel Network