Our plagiocephaly journey: Reflections on the helmet

Plagiocephaly helmet reflectionsWhen we first started the plagiocephaly helmet it was difficult for us. I tried to decorate it and make it feel more ‘girly’ but honestly, it was not something I really wanted. Now that it’s been one month since the munchkin graduated from her plagiocephaly helmet it’s much easier to look back on and say it was worth it. This past month has given me plenty of time to reflect on how our plagiocephaly went. Here are my thoughts:

  1. The helmet is only half of what you need. The other half is a really good orthopedic specialist who understands plagiocephaly and how to fix a baby’s flat head. There is a limited amount of time for this to occur, so someone who wants to ‘wait and see’ may wait too long and then there won’t be anything you can do to fix it. We were very lucky to have a wonderful doctor who explained everything to us and what he was doing to make sure the helmet was fitted properly and her head grew appropriately.
  2. It was worth it. Yes, the 5 hour round trip drives for a thirty minute appointment seems outrageous, but I feel like it’s better to spend the time now rather than have a child who may never have a round head. Our specialist even joked that the helmet cost more than his first car (mine too!) but we do crazy things for our children.
  3. It takes commitment. We kept the helmet on for about 22 out of every 24 hours. It’s supposed to be on for 23 hours every day, but 22 hours fit our schedule better. I do not think it would have worked with much less than what we did. We occasionally took the helmet off for bathing, photos, and eating (who wants to clean spaghetti out of a helmet? Not me!), but other than that it stayed on. If you’re not going to be committed to keeping it on all the time don’t bother.
  4. I do not miss taking it off and putting it back on. I was terrible at this. My husband was much better at it than me. I’m guessing it feels similar to someone putting a motorcycle helmet on you. Not terrible, but certainly not super comfortable. It did not help that it made me feel super guilty all the time.
  5. It brought my husband and myself closer together. It was one of the first major decisions we made regarding our daughter and we supported each other in doing it. I cannot imagine doing this without my rock next to me. The fact that we both agreed upon this decision and lived through it together is something I am so glad to have done, even if it wasn’t the funnest at times.
  6. I will do anything for my daughter. She has me wrapped around her little finger. She smiles at me and I love it. She needs a helmet and I’ll buy it. I know I’ll tell her no a lot in the future, but this was something I was more than happy to say yes to. I mean, look at that face!

Madison without her plagiocephaly helmet. After treatment was complete.

 

 

Baby’s first trip to the zoo

It’s not often we have absolutely nothing to do over a weekend. Typically, our weekends are filled with catching up at work, going to events, seeing family or friends, cleaning, and trying to do a bazillion loads of laundry. This weekend was a different story. I managed to both clean and do a majority of the laundry throughout the week. Once Saturday hit, we really had no plans. We haven’t had that happen in so long that we honestly didn’t know what to do. So I suggested we take Madison to her first zoo trip. I cannot wait to continue to add more ‘firsts’ as Maddie grows and we watch her experience more of what life has to offer.

The zoo in Dodge City, Kansas is not a big one. You could probably manage to walk through the entire thing in 15-20 minutes, however, it’s hours of entertainment for a little kid. We anticipated being there for 30 minutes or so with a baby. I was hoping she’d be intrigued at the animals. Our first stop was to see the goats. Sometimes I laugh at what animals you can find at smaller zoos. I’ve seen a deer in a zoo in Emporia, Kansas before and I remembered thinking you didn’t need to be in a zoo to see a deer, they are all over the side of the road while you’re driving. But, I guess they’re the cool thing in small town zoos. I had the same thought about this goat. Goats are very common in the city and on farms around the town, but they’re in the zoo, too. I’m not sure Madison knew what to think of this goat. She stared at it, but did not want to get too close.

plagiocephaly baby first trip to zoo with daddy

We continued to walk around the zoo and showed her a bear, cougar, wolves, raccoon (weird animal to have in a zoo) and a buffalo. She showed absolutely no interest in any of them. She mostly looked confused every time we stopped. Almost as if she was wondering why our walk was taking so long. I did manage to snap a few selfies of us as a family on our first zoo trip together. I know it seems small, but I cannot wait until she’s old enough to truly have fun at the zoo. I have great memories of my parents taking my sister and me to the zoo when we were younger and I want Maddie to have the same memories as she grows.

When we got home we decided to make some vegetarian spaghetti. We often experiment with our sauces and put in extra ingredients to see if we like it better than the canned version. This time it didn’t turn out so well. We opted for a garden veggie Ragu and added in olives, balsamic vinegar and spinach. My husband really like it; to me it was okay, but nothing better than okay. Maddie didn’t know what to think. We’ve never let her feed herself before, but she enjoyed the experience. I knew it was going to make a mess, but since we really had no other plans I didn’t mind the extra laundry or giving baby a bath that night. She sure had fun. It’s the longest she’s ever sat in her high chair without getting fussy. When she smiles it makes us smile. She may drive me crazy sometimes, but I love our little munchkin and watching her experience new things is one of my greatest joys.

What things have you watched your child do for the first time?

Do you have great memories of the zoo with your family?

Plagiocephaly update + Pros & Cons

Madison in her baby plagiocephaly helmet
I read today that this week is plagiocephaly awareness week. In honor of that, I thought I’d share an update on our little princess (in her crown above)Β and her helmet therapy so far.

Madison has been wearing her plagiocephaly helmet for a full two months now. It’s been a long road so far, but we are both so glad we made the decision to use it. She hardly even notices (or cares) that it’s on and it has made a world of difference. At our last appointment even our doctor was impressed at her progress. But, before I go into that, let’s talk about the pros and cons of having a helmet.

Pro –
Baby’s head will be well protected as she learns to roll, crawl, and possibly walk. Madison rolls like a champ in the helmet, but slows down a little when she’s out of it. She’s not as sure how to roll without banging her head around on the ground. It probably doesn’t help that our floors are pretty hard.

Madison in her baby plagiocephaly helmet

Con –
The helmet is just enough extra weight on the head that we’ve noticed she’s a little behind other babies her age at sitting up and crawling. She does much better when we remove the helmet, so we know she can, it’s just a struggle for her at times.

Pro –
Baby’s head is noticeably corrected. I do not believe we would have been this successful with the ‘wait and see’ method. Not only are her ears no longer as crooked, but the her overall head shape is more like an oval and less like a parallelogram. If you are looking for results this is the best way, in my opinion, if your baby has a moderate to severe case of plagiocephaly.

Con –
All. The. Sweat. It’s a good thing Madison’s only had to wear this through the winter and we have air conditioning. I have noticed when picking her up from daycare than she is super sweaty. I even dress her with lighter clothes to make up for how hot she gets in the helmet, but her head is still super sweaty some days. I could not imagine doing this in the middle of summer, or if we did not have air conditioning. It is definitely something to consider if you’re looking into this.

Madison in her baby plagiocephaly helmet

It is really cold outside and baby is in a short sleeved onesie and leggings so she doesn’t sweat too much. Plus she’s having a ball in her blow-up bathtub.

Pro –
Believe it or not, her wearing the helmet has had a ton of people come up to us and say they were considering getting a helmet, or they did use a helmet, or they know someone who used a helmet. It makes me feel less like a failure as a parent and more part of a team of people with similar issues. My mom was concerned people would think we had hurt her and banged her skull up, but so far no one has ever mentioned that to us. Honestly, it’s been kind of a bonding experience with strangers.

Maddie4

Con –
The cost. Seriously, it’s over $2,000. That’s a lot of cash that insurance does not often cover. It’s typically deemed cosmetic, therefore, it’s on your own to pay. But, $2,000 now to ensure my baby doesn’t get made fun of for the rest of her life, I’ll pay it.

Pro –
Our insurance covered the cost! We really lucked out!

Con –
Our insurance covered the cost because it was deemed ‘medically necessary’ due to the severity of Madison’s plagiocephaly. She was initially 16mm off. Anything over 15mm our insurance covered. While I’m grateful for the extra millimeter, I really wish we would not have needed the helmet in the first place.

Pro –
This too shall pass. In another month or two all of this will be a memory and we’ll have our cute, cuddly, adorable munchkin with a round head. In a few years, I’m sure we’ll laugh at the trips to Wichita and visits to the doctor.

Madison in her baby plagiocephaly helmet

Helmet hair, don’t care

Speaking of doctor’s visit, Madison’s last visit we did a half-way checkup on her progress. The doctor repeated many of the measurements from her first visit. At the initial intake she had a 16mm difference from her left and right side. The doctor told us at that point in time she would probably never get below a 6-7mm difference based on her age and how quickly baby skulls fuse together. At this trip when he measured she was down to only a 5mm difference. That’s HUGE! Especially considering anything within the 0-5mm range is considered normal. We were so happy to hear this. Seriously, I couldn’t stop smiling all day. I’m so glad it’s working so well for the munchkin.

The doctor did relay to us that because her head was so off-kilter to begin with that as her left and right sides even out the ratio of her skull length to width is beginning to get to be too much. Basically, her head is too long and thin so now they are adjusting the helmet to try to make her head a little wider and less long. I do not think I would have noticed this if the doctor had not pointed it out, but apparently it’s a thing. Who knew?

Even if we stopped with the helmet today I would consider it fully a success. I’m very pleased with the results and hope that Madison will understand some day why we put her through it. And, looking at these photos, can she blame us? Who doesn’t love a baby in a cute little pink helmet?

Maddie6

Questions about the helmet process or plagiocephaly? Head to my Facebook page and ask me about it. I’d love to hear from you!

 

Maddie’s First Valentine’s Day

This week we celebrated our first Valentine’s Day as a family. Madison had no idea what was going on, nor did she care, but we let her know how much she was loved since she is our littlest Valentine. I got my craft on and decorated her helmet for the occasion. I’m guessing she liked it considering these faces.

We made enough extra hearts that we brought some to Maddie’s daycare to share with our babysitter’s daughter. She absolutely LOVED them! I mean, what four year old doesn’t love stickers? This little girl loves Madison and always notices how we decorate her helmet, so I think she liked being able to help. James’s parents visited us and we all celebrated together as a family. Madison liked seeing her grandma and grandpa, even though she was super sleepy and cranky by the time they arrived.

Madison is supposed to get one hour out of her helmet a day. We cheat and give her 2-3 most days. It’s typically from whenever we get home from work until she goes to bed. We’ve been trying more solid foods with her, but we wait until she’s on helmet break. I do not want to have to clean food out of her helmet because she gets it everywhere. On the bright side, she knows how to grab her spoon. She literally grabbed it out of my hand to get to the food. She’s just like her mommy – she loves food! She even tried to eat it off of the chair strap. This baby knows what’s good.

The helmet has basically become such a part of our routine none of us even notice it. I can honestly say, I’m still happy we’re doing this and hope that she’s made more great progress when we go back to see the doctor again.

First Follow-Up Appointment

This past week Madison had her first follow-up appointment with the doctor at Hanger Clinic. James and I have a love/hate relationship with this appointment. We look forward to it so that we can see if the helmet is working, but we both hate the five hour round trip to visit the doctor in Wichita. We arrived a little earlier than planned so we stopped for a snack at Panera. My thought is, if I need to get up at 3:30am for this trip, at least I can sneak in a tasty bagel. James wasn’t that upset about visiting it either. It makes the morning a little easier with some caffeine (and a baby who’s not hangry).

Madison fueling up for her appointment

Madison fueling up for her appointment


As I’ve written before, she started off with a very flat head. Her cranial vault asymmetry should be anywhere from 0-5, but hers was at 16. The doctor had told us previously that anything over a 10 they would recommend a helmet for. Our doctor took some updated measurements and it was a success! Two weeks into the helmet and she’s already dropped to an 11 on the cranial vault asymmetry. James and I were super excited. We’re hoping it means that maybe she’ll only need the helmet for a couple of months, instead of six months like we were originally told.

Maddie and mommy after the good news

Maddie and mommy after the good news


I had this dream of changing Madison’s helmet design daily to be fun. I can tell you right now that was overly ambitious of me. I changed her helmet last Sunday and as of this Sunday I still haven’t changed it. So much for that idea. Maybe I’ll do better this week. Anyways, here’s her one helmet this week. On the bright side, with Valentine’s Day coming up the heart fits!

On a different note, Maddie tried her first solid food this weekend. She ended up loving it. We simply pureed some fresh avocados and she went to town. She had at least five little spoonfuls. These photos don’t show her smiles as she ate, but she really enjoyed it.

Madison's first taste of food

Madison’s first taste of food

Week One: The baby & the helmet

The past few days Madison has been doing great in the plagiocephaly helmet. She’s adapted well and, other than a struggle keeping her head up during tummy time, she doesn’t mind at all.

I’ve been trying to decorate the helmet every day with something new. I have a few different vinyl sheets from Hobby Lobby and have been using craft cutters on them so far. I’m hoping to borrow a Cricut soon and do some more intricate designs. So far, we’ve discovered that the smaller the vinyl, the better it works. Large vinyl stickers have problems because the helmet is round and they are not.

This week’s helmets

Plagiocephaly helmet with a bow

Plagiocephaly helmet with a bow

Plagiocephaly helmet with polka dots and a bow

Plagiocephaly helmet with polka dots and a bow

Plagiocephaly helmet with sparkly pink flowers

Plagiocephaly helmet with sparkly pink flowers

Plagiocephaly helmet with the Conq mascot

Plagiocephaly helmet with the Conq mascot

Madison rocked the helmet during week one. Our babysitter could not figure out how to take off the helmet so her adjustment schedule wasn’t exactly what the doctor recommended, but it seemed to work. We did worry for a little while because the helmet was rubbing a lot on the one side of her head and was causing it to make her skin end up almost raw. We ended up putting a band-aid on it and that seemed to do the trick. After two days the spot was healed.

The most exciting part of the week was taking Madison to her first basketball game. She got a little overwhelmed by the noise, but she got to watch a great game. She’s so long already, maybe she’ll be a basketball player in the future. She sure seemed to enjoy it.

Day One

Yesterday was officially day one with the plagiocephaly helmet for baby Madison. Day one entails having her wear the helmet for an hour and then giving her an hour without it on. Here’s what we’ve discovered so far:

  1. The helmet makes her HOT. We’re down to a short-sleeved onesie in January because otherwise she was getting too warm. Her head was so sweaty the first hour I immediately changed her.
  2. She doesn’t actually mind the helmet, only having the helmet put on and taken off. If she had it on all day she might be okay with it.
  3. The helmet is more weight that she can hold up with her neck. It has made tummy time a little more challenging.
  4. The helmet makes me feel like a bad parent (I know I’m not). I know there’s nothing I could have done to make her torticollis stop her head from flattening, but i wish there was.
  5. She’s still the cutest baby I’ve ever seen, even with the helmet. I mean, look at that face. 
Plagiocephaly helmet day one

Plagiocephaly helmet day one