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 weeks...at least there are vent holes in it.
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Alice Mary - 4 days after her surgery
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| 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...
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Big sister Cassidy feeding Alice a bottle
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| Hanging out with her big brother Trevor |
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| Taking a nap with Daddy |
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| Pink flower :) |
She is so beautiful, Cheryl. :)
ReplyDeleteThanks so much Tamara!
DeleteWhat a beautiful little girl! I will absolutely pray for Alice! Also, what a great idea decorating her helmet! The velcro is an amazing idea in thinking out the box! You seem like a very strong mother! I look up to you and ur supporting lil family!! It is awesome you decided to take the time and use what your daughter and family are going through to help others as well! I hope you are proud of yourself cause i know i sure am! :-) One more thing..i seen ur post on NBC12 for the fair and it lead me here. I really hope.Alice gets to go!!
ReplyDeleteThanks so much Kathy for taking the time to read about our little girl and for your kind words! I do feel proud of myself for helping others and getting the information out there but it makes me feel so GOOD to hear others tell me that...it just reassures me that this was the right thing to do! Thanks so much again for taking the time to write!
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