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a backwards shirt and scruffy hair

a weed becomes a flower when it’s a gift from a child

sister watches stoicly

her whispy shock of yellow hair dancing in the breeze

too-big shoes and what used to be a flower bed

none of that matters.

This is my first time participating in the i heart faces weekly photo contest. With that theme, how could I resist? This is probably my favorite photo ever taken of one of my cupcake creations. I just love the simplicity and delicateness.

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Today I wanted to post about my baby girl and her plagiocephaly and helmet journey. I last left off with the announcement that she would be getting a helmet, but haven’t updated since, and it’s unfortunate because I really was hoping to document her journey better so that any parents facing this diagnosis in the future might find my blog and ease some fears. I Googled endlessly when we first found out Avonlea would need a helmet and came up with very little first hand experience, and I wanted my blog to be that source. Best laid plans and all that.

But! In this post I’m going to compile all my most important thoughts, tips and FAQs that I think will help make it a little easier for anyone else going through this. If you have any additional questions, please please leave them in the comments and I’ll add my answers to the post.

So, here it is. Everything I think you should know if you just found out your baby needs a helmet. Let’s jump right in.

• Don’t panic. Seriously. DON’T panic. I know it’s hard. I panicked like hell the day we took my baby to be fitted with her helmet. There are a million thoughts flying through your head and none of them are good. But I promise. PROMISE. It will be okay. It’s not that bad. Think of the future – your baby with his cute little perfectly round head – and that is what will get you through. It seems like yesterday that I was white-knuckling the steering wheel on our way to the orthotist on Christmas Eve, and six weeks have already gone by in a flash. And all that panicking? Totally not needed. This has been worth it.
• But what if my baby hates it? What about sleeping? This was my biggest worry. That she would cry incessantly and refuse to sleep for the entire three months. But you know what happened? She didn’t cry. At all. The orthotist plopped her helmet on her head and she totally didn’t even care that it was there. And, he told us that while some babies do cry, it’s not for long and ALL the babies he’s worked with got used to it almost immediately.

  Some orthotists will have you follow a gradual schedule to get your baby accustomed to the helmet. We didn’t really do that because she seemed fine in it immediately. The first couple days were a little rough, and she didn’t want to sleep at night wearing it. That is okay and normal. Just take it off for the night. By day three or four, she slept in it all night for the first time and it was smooth sailing from that point.

• What if it leaves marks? It looks like it’s hurting her! The helmet should not be uncomfortable or painful for your baby. It may leave red pressure marks when you first take it off, but these should go away within 30 minutes. If there are any marks that don’t go away, any skin abrasions, or your baby seems to be in any pain at all, LEAVE IT OFF and call your orthotist. Trust me. You don’t want to irritate anything worse than it already is because that would mean an extended time of leaving the helmet off, which is less time for the head to grow properly. Your orthotist can shave off some of the foam on the inside on any spots that are causing irritation.

• You will miss that soft little head. There’s no avoiding it. You will miss the skull snuggles like crazy. I miss smelling her head the most. But, it gets easier. The helmet used to get in the way but now it’s simply a part of her, and I smother it with kisses just as much as I do any other part of her body. It just makes you cherish that one hour a day so much more. (Oh, and speaking of that – you’ll take it off each day to wash it. Word of warning. The smell? Is like that of 100 sweaty feet. It’s putrid. But you won’t care. I promise.)
• Decorating. If you’re anything like me, the helmet’s gotta be cute. It just does. There are several methods of decorating. I initially had Avie’s airbrushed at a kiosk in the mall. I quickly got sick of that design though and decided to paint it a solid color with just her name and a couple stickers added. Painting it is super easy. Just get regular acrylic paint and some Mod Podge sealer. Paint on 2-3 layers of the acrylic, drying between each layer. Once you’re satisfied with the look, paint on a couple layers of the Mod Podge. This leaves a nice shiny finish and prevents chipping. Then add any stickers and Mod Podge over those as well. Vinyl stickers work much better than paper. Bling Your Band is also a great resource for custom vinyl decals created specifically for cranial helmets and bands.
• I’ve heard Cranial Tech is the best. Yeah, I’ve heard that too. Unfortunately for me and thousands of other parents, there isn’t always a Cranial Tech close by. I’ve read about parents who traveled several hours in the car or even by plane to get to a CT (makers of the DOC Band). But what I’ve found in my research is that ALL of the helmet/band brands are effective and none are really “better.” You have to make your own choice as far as if you’re willing or able to make the trek to one. Me? I went with what was local and couldn’t be happier. Avonlea is in a Becker Band and is making absolutely amazing progress. It’s one of the most little talked about brands, which worried me at first, but it really doesn’t matter. As long as you get a proper fit and a good orthotist, any brand or company is going to do what it’s supposed to. Other common helmet brands are STARband and Hanger.

  Another thing to keep in mind is that Cranial Tech makes what is called an active band. This means that the device applies constant gentle pressure to the head to help it grow properly. You may need to have more adjustments with this type of band. Becker and I think Hanger and STAR as well are all passive bands. Meaning the helmet is constructed in the desired final head shape and allows space for the head to grow into it rather than applying pressure. We only see our orthotist once a month. Both types are good, you just need to talk to your doctor and orthotist to decide which would work better for your specific situation.

• Take pictures! You will regret it if you don’t, I promise. Take lots of pictures of your baby in the helmet, as well as progress pictures of their head. You will want to compare the pictures as this is the best way to see progress. And, even though it might not seem like it now, you will want the visual memories of your baby in her helmet. It’s for such a short time in their lives and you will cherish the memories of getting through that time and coming out on top.

• Don’t be a hermit! Don’t worry about what people think. Take your baby out in public as you normally would and don’t be ashamed. Yes, people will stare. You will get used to it. For me, I just remember that by taking Avie out, I’m making this more common and more accepted. I haven’t seen another helmet baby out and about yet, but I hope to so I can make that mom or dad feel good about their choice and proud of their baby. Sometimes people ask questions (the most common being “What’s wrong with her” and “What happened to her”). I’ve even had a group of jackass teenagers make fun of her at the mall. Yeah, giant eyeroll. Just use it as a chance to spread information about plagiocephaly. I have met so many people who, after I explain our situation, say “Wow, I think *my baby/my daughter’s baby/etc.* could have really benefited from that treatment.” I also meet people who know of other babies who wear helmets.

And above all, feel confident in the choice you have made for your child. It really, really is worth it. You will never regret choosing helmet therapy, but you might regret it if you didn’t.

Okay, so that’s all I have for now. I hope this helps even just one person.

Can you guess why I’m so happy? No, it’s not because I have the coolest mom ever*, although I do smile about that quite often. (*Disclaimer, I was not paid by my mommy in any way to mention her awesomeness. Unless you count breastmilk as payment.)

Last week I went and saw a nice lady doctor at the children’s hospital. She looked at my head and made me hold real still, which I didn’t like much. And she made me lay strapped down on this cold table so they could take pictures of the bones inside my head. That wasn’t fun either. But after all that, she told me that I don’t have to have surgery! And I don’t have to worry about that big long C word any more. Just the long P one, which means I need to wear a helmet for a little while. But that’s okay. As long as I don’t have to have any surgery!

I was kind of scared when they told me I had to wear a helmet. What if it hides my gorgeous long locks? But my mom said she would get it painted real pretty for me, maybe even with Hello Kitty, which is my favorite. So I guess it won’t be so bad. I have to wear it 23 hours a day, and from the look on my mom’s face, that’s a pretty long time. I don’t know, I haven’t figured this number thing out yet. I especially need to wear it while I sleep though, since sleeping in my most favorite position is what made my head flat.

After we finished at the doctor, we went to a place that makes all kinds of orthotics and prosthetics to have a mold made of my head. I had to sit on my mommy’s lap with a sheet of crinkly paper between us. I was pretty stoked about it at first.

Then a man put a stocking over my head and I got a little scared. He said it was to protect me from the plaster.

But all it made me want to do was turn around and snuggle into my mommy’s shoulder.

The process started and it wasn’t quite as bad as I expected. The man put a big piece of cloth dipped in plaster across the back of my head. I was nice and calm.

I got pretty mad at the end though when he had to press pretty hard on my head and hold me really still again. I really, really don’t like being held down. So I yelled at everyone to get away.

It was over really fast after that though, and I was back to my happy self! They told us we would get the helmet in about two weeks. I’m getting kind of excited about it and can’t wait to see how my new round head makes me even prettier.

Thanks for checking on me!

Love,
Miss Avonlea