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

I decided to take an unannounced bloggy break. I tend to do that. I’m so far behind on my blog reader and Twitter that I don’t know if I’ll ever get caught up. So please forgive me. I still love you, promise!

I’m posting today because Avonlea had a checkup with the pediatrician to address a couple concerns I’ve been having. And, well, I could use as many positive thoughts right now as possible so I had to share it with the internetz. <3

So. First off, we're starting Prilosec for reflux to hopefully cure the nightly screaming that I am seriously completely exhausted with. That, coupled with the projectile sleep-vomiting, points to reflux. Sigh.

And, as expected, we will be seeing a plastic surgeon at Riley. I know I’ve mentioned a couple times that babygirl has a flat spot. We’ve been watching it virtually since birth, and it has progressed from just a flat spot to a very defined deformity, complete with ear misalignment. I’ve been pretty much obsessing over it for four months and decided to move forward with an evaluation, despite everyone telling me it’s “not that bad.”

Well, the doctor took one look and didn’t hesitate, so it must be worse than she’s used to seeing. But, I knew that was coming. Now I just hope that our appointment is soon so I don’t have too much time to consult Dr. Google and lose my mind over it.

Right now there are two possibilities – plagiocephaly which is what I was originally thinking, or craniosynostosis. Which is harder to say and a lot scarier. Positional plagiocephaly is generally just from remaining in one position for too long, which causes the deformation. Treatment would likely be the cranial band, which she would hopefully only need for 8-10 weeks. Craniosynostosis, on the other hand, is congenital and involves the skull plates fusing too soon. Treatment is surgery. On my baby’s SKULL. Ear to ear incision. Hospital stay. Recovery. NO. So yeah, we’ll take the baby helmet, please.

I did read that taking certain prescription drugs during pregnancy can increase the occurance of plagiocephaly.. one of those drugs is sertraline (Zoloft) which I took until 27 weeks. So, there’s hope that it’s the lesser of two evils since all signs are pointing to that right now. Positive thoughts are greatly appreciated.

In case you’re curious, here’s what we’re dealing with.

The dot marks the middle of her forehead.

It’s been fun, can’t you tell?

And of course, leave it to my kids to put things into perspective. I asked each boy what he was thankful for, expecting the typical Mommy Daddy Grandma House answer.

Wrong.

Sawyer is thankful for “quesadillas, balloons and dandelions that float in the air.” While Beckett’s list wasn’t quite as whimsical or profound (eating food, crackers, burgers and dinner), it too left me refreshed and a little less gloom and doom.

Like, really, how can you be depressed when there is a plant right outside in your front yard that, with a simple breath, sends dozens of tiny magical puffs of awesomeness floating into the sky? You can’t, mom. Now make yourself a dang caysa-dilla and get happy.

So. My thankful list this week? Cheap mailboxes at Menards. Cool neighbors. No cavities. An extra third bathroom to contain a pukey cat. Burger King’s cupcake shake (you sweet, sinful thing, you).

And also, indoor cats that don’t eat a mouse and then hurl it back up, whole, on my basement floor. (Sorry about that, Mom.)

Yeah, it could be worse.

They looked freakin’ cute.

And, the neighborhood assholes teenagers left us a lovely “trick.” How adorable of them.

And the community we live in? Why, it’s so fabulous that not only will the homeowners association (which we pay a ridiculous amount in fees to) NOT cover the repair costs, they will also drive by and give us a ticket and a fine if we don’t have it fixed immediately. Welcome to suburbia!

You have this tiny little baby. All it does is poop and eat and sleep and it likes to wake up a lot at night and cry for no reason and keep you from taking a shower, like, ever. And you think, man, this is hard.

Then they get a little bigger. And there’s teething, and becoming mobile, and figuring out how to feed the thing and the begging and pleading to sleep through the night just once. Just please go to sleep. And sometimes you think, I can’t wait until this kid is older. This is hard.

But the potty training. Ditching the crib. Terrible twos. Tantrums. Back-talking. Injuries. Wait a second. When does this start getting easier?

It doesn’t. Four years in and it hasn’t gotten easier. Different, more challenging predicaments await each new year. And from what I’ve heard, it just keeps getting harder and harder (as the parents of teens like to smugly remind me every chance they get).

I feel intimidated a lot of the time. Inadequate. Not worthy of being in charge of another human being (or 3!) and making sure they learn to choose the right paths.

Most recently, we’ve been learning that the way we parent (or don’t parent) has a huge, giant, I’m talking ENORMOUS impact on our 4-year-old’s mental and emotional well-being. Simple things, like absentmindedly rattling off one too many “just a minute, son”s and out of nowhere you’ve got a kid crapping on the floor for attention. Yes, again. Still. Whatever.

But really, this isn’t going to be another poop post. Just an example, albeit kind of a disjointed one, of how this. Is. HARD. When we first brought home that teeny little bundle, sat in our living room and asked each other, So what do we do with it now? we weren’t thinking about how four, five, six years down the road we’d have to worry about something much more complex than the color of his poop or how many jars of baby food he should be eating per day.

It seems like it should be a given – pop out a kid, hope to all the deities than you don’t mess it up too horribly. And maybe I was just incredibly naive back then. But tonight was my first real, true HOLY SHIT, WHAT IF I SCREW HIM UP FOR LIFE? moment.

It’s scary.

Because he’s a really cool, intelligent, loving kid. And god, I really hope I don’t screw him up. If I can accomplish that, then I’ve succeeded in life.

This has been the month of whacked out sleep patterns. That whole drifting softly off to sleep on your own thing? Yeah, not so much. You’re not real fond of being laid down awake any more. And we’ve had several nights where you decided to scream at the top of your lungs for no logical reason. For a real long time. And, if I’m being truthful, a couple nights where Daddy slept on the living room floor next to your swing because the swinging was the only thing that kept you asleep for more than 30 minutes. And that’s all I’ll say about sleep, because the jinxing? Do not want.

All things considered though, you’re still an easy baby – easy to soothe, easy to entertain, easy to travel with. Oh yes. You’re extremely portable and it is FAB-YOU-LOUSSSS. I remember having to meticulously plan even the simplest trips with your brother because after an hour he was spent and wasn’t afraid to let everyone in a 2-mile radius know about it. Your motto? Have Boobs, Will Travel.

You’re still a tiny little thing in my eyes, holding steady at around 12 and a half pounds. You seem huge next to your brand new 8-pound cousin, but you’re not even close to touching the 18 pounds your brother boasted at three months old. Yeah, you’re teeny. And I’m enjoying it. So is my back.

Milestones? Eh. You tolerate tummy time. You don’t really roll. Which is fine with me because the thought of teaching your brothers what baby-proofing means? Yeah, terrifying. Stay immobile for as long as you want. You are feeling much more solid and love to do these cute little ab crunches when you’re laying on your back, which we’ve taken to mean SIT ME UP NOW PLEASE THANKS. You can easily pull up to standing while holding onto our hands and that’s pretty much the coolest thing ever in my world right now.

The Battle of the Flat Spot looks to slowly be leaning in our favor. It’s still definitely there, camping out on the right side of your head, but I think it’s getting more round and less noticeable. Which is awesome because I’m totally not down with having to strap a helmet onto your head for three months. We’ve been trying to keep you upright and off the flatness by letting you hop around in a Jumperoo, which you freakin’ LOVE. Seriously best money ever spent with all three kids. We heart Fisher Price around these parts.

You’re still a smiling machine, of course. And the dimple. The DIMPLE. It’s still melting me into a puddle of rainbows and sparklies. LOVE that perfect little dimple and those amazing blue eyes. Gorgeous. Yeah, so I’m biased. But you are.

In summary, you’re continuing to be pretty stinkin’ awesome, babygirl. I think we’ll keep you.

Love,
Mama