Hi. My name is Katie. And my son wore a Helmet.

Yes. I was a helmet baby mom.

My helmet baby

I have been getting questions from other mamas about our experience with Cruz wearing a helmet, so I thought it best to jot down our story and my thoughts in one fancy, little post.


If you haven't dealt with this personally or know someone who has, chances are you don't know much about those babies you see with helmets on their noggins. The misconception is that kiddos have to wear them because their parents never pick them up and/or because they've been on their back too much, so they have a flat spot that needs fixed.

Could that be true in some situations? Absolutely. And prior to being forced into learning more about it, I thought the same thing (shame on me).

Was that true in our situation? No.

Our story. When Cruz was born, we noticed a slight indentation in his left jawline. Our doctor said this would correct itself in a few days and was nothing serious, but that when he was on the inside, the left side of his face was shoved up against my pelvis bone. Little did we know that this also caused his head to be pushed facing right for a good majority of the last trimester (we think). But we weren't led to believe anything was wrong.

We recognized early on in Cruz's life that he preferred to lay with his head to the right - whether he was sleeping, on his floor mat, you name it. Or with his head resting on his left shoulder.

Normal sleeping position, head leaning on his left shoulder

Head resting on the back right side of his head (eventually causing a flat spot)

We also started noticing a slight flat spot at the back/right of his head. At his two month check-up, we mentioned this to our pediatrician and after checking his head, she referred us to Omaha Physical Therapy to meet with a PT and get some exercises to do at home to work on his neck's range of motion. We did these a full two months before we were told that while they were working, he would still need a helmet to fully repair the flatness.

Cruz had Torticollis (tightness in the muscle that connects breastbone & collarbone to the skull), which caused severe Plagiocephaly (which is essentially flat head syndrome). Because of that tightness he suffered from Torticollis in his left side of his neck, he didn't have full range of motion in his neck and whenever he was on his back he only rest on the back right of his head which caused a flat spot. For children with full range of motion, they rotate from sleeping/laying on the left, right or center, which reduces flatness in one specific area.

PT recommended making him sleep with his head to the left.
You can see its uncomfortable for him & not full range of motion.
He couldn't turn completely to the left because of  his Torticollis.

Lots of tummy time - head to the left only to stretch out his tight neck muscle.
The mirror helped to keep him occupied.

Had to prop his head to the center in his car seat, otherwise always fell to his left shoulder.

Our first question, of course, what would happen if we didn't get the helmet? The answer: he could have problems with his jawline & being able to eat properly, his face could be slightly deformed because the flat spot essentially pushes everything forward so the right side of his face was not in line with the left. It could result in issues with his sinus cavity and issues with his eyesight.  Well, we weren't going to risk any of that if it was in any way preventable.

Based on this, we were referred to Trust Orthotics to learn more and get fitted for his cranial remolding helmet. On April 12th, we got out helmet. To be honest, it sucked. The first day was especially hard, but the first week was rough. That's the transitioning period from getting used to wearing it for a couple hours a day (the first day) to wearing it 23 hours a day by the end of the first week.

Check-ups. Throughout the four months little man donned his helmet, we had regular check-ups at Trust. Mainly to perform his scans and check progress, but also when we noticed the helmet was getting tight in some areas and needed adjusting.

Cruz started at 12 1/2mm variance which fell into the "severe" category and the goal was to get him to 3mm or less.  He had great progress early on, seeing 5mm improvement after the first month! But then as our Orthotist said, there would be good months and bad in terms of improvement. The month he only had 1mm improvement was rough.

He's not too sure about this. (Getting a scan at Trust Orthotics)

  

First scan (left pic) - check out the flat spot on the back of his head (bottom right of pic). April 2, 2012

Mid-point scan (right pic) - flat spot already rounding out. June 25, 2012

Little man was officially helmet free four months after first getting it. This was August 2012.


A couple of things about this helmet business:

Have fun with it. Or as I like to say: when life gives you lemons, make lemon drops...with lots of vodka. Something like that.

I made some fun onesies for little man to wear during his helmet days. If anything they were super cute and showed that we were having fun with this little situation we were in. And you know me, I love a smart ass message on a t-shirt.

"Just fixin' my melon. Not quite ripe."

"You should see the other guy"

Accessorizing his head gear. Personally, I had known from early on that I wanted to do something with little man's helmet to make it unique. I had found shops that had stickers and appliques, but they weren't really what I was looking for. I stumbled across the Wrap Buddies organization in Dallas, who voluntarily help create custom wraps for cranial remolding helmets and prosthetics. By day they are a graphic design company and by night they help make this situation a bit easier to handle for families who have a child with a helmet...and for free. The cost of a helmet is quite expensive and most often insurance doesn't cover it because they consider it "cosmetic", so Wrap Buddies is an awesome organization that recognized this and wanted to do their part to make it easier on families and the children. They partnered with other companies across the US and we were able to find Sign + Graphics in Sioux Falls, SD to help us with Cruz's helmet.

Bad ass baseball design they created.

Posing with our stylin' little dude

My tips:

• Yes it sucks. And it's inconvenient and uncomfortable. But it's not that bad & definitely not the end of the world!  Put it into perspective. Some mamas and babies have to endure much more serious diseases and illness. It's a small blip in your kiddo's life and they won't even remember it. Heck, I barely remember it these days.
• The helmet will SMELL. Really bad. Wash it thoroughly every night (during the hour they are allowed to take it off each day). I never thought my cute, little guy could smell so bad, but it was something like a teenage boy's sock would smell after two-a-day football practice in the 100 degree heat. And the sweat, poor little man would sweat so bad in that thing. Just the nature of the beast unfortunately. Especially since he wore his in the hottest months of summer.
• You're not the only one - more and more babies are having to get helmets for many different reasons.  I found comfort in approaching other mamas who had a baby with a helmet for advice and just to chat. I also have made sure that when I see them now, I stop them and comment on just how cute their helmet is and tell them we went through it. I remember a woman doing that to me in Target and reassuring me that it will go quickly, that really helped at the time. I also found a Plagiocephaly group on Facebook and took comfort in relating our stories with theirs.
• People will stare. And they will ask rude questions. And make their own assumptions. Just don't let it bother you and be prepared with a smart ass remark (oh, wait, that's stooping to their level, you say?). Ok. Never mind about that last part. I can remember a punk kid at the mall asking me what was wrong with my kid's head. It caught me off guard and I wish I was prepared to kick his ass, err I mean, with a good comeback.

I hope this helps. Whether your little has to get a helmet or you just never realized why kids have to wear them. I know that I'm much more educated as a result and it has definitely helped me have such a different level of compassion for mamas who have to go through anything that's "not the norm" with their children.

Linking up

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Read more about our helmet journey below...but let you warn me, there was a lot of 'woe is me' going on back then. Don't judge. Evidently I thought it was the end of the world. =)

Physical therapy - 1 / 2

Leading up to the helmet - 1 / 2

Getting used to the helmet - 1 / 2 / 3

Accessorizing our helmet - 1 / 2

Progress - here / here 

Helmet Update

Yesterday was our four month check up for little man's helmet. I can tell you that this last month we have slacked in making him wear it...between him being sick with a fever and the 100 degree temps we just couldn't do it. So it was no surprise to us that his improvement was only 1mm, however, I was happy to hear that he did have 1mm improvement because that brings us one step closer to being finished!

Overall his head is looking great (as seen here)! Tim would just like to see a bit more rounding in a few areas in the back, which we notice as well. However, we have seen amazing improvement and I would recommend the process to anyone who has a child with extreme Torticollis and/or Plagiocephaly. Trust me, it's not easy or fun, but it's so important and the time really has gone by quickly.

Obviously, as with every appointment, we were hoping this would be our last, but.....we did get some great news - little man only has to wear his helmet 8 hours a day from here on out! That is SO much easier/better than 23 hours a day. We are going to try it out at night while he's sleeping and if it impacts his sleep we will change to wearing it while he's at day care (sorry ladies) because I need all the helmet-free cuddle time I can get from our little guy.

Waiting for the scan results - we won't miss the nylon over his head!

Hamming it up - while the doc was shaving down his helmet for a better fit

Can't get over him sticking out his tongue

Ready to go!

Helmet Update

Yesterday afternoon we had an appointment at Trust Orthotics for our third scan to see if Cruz has had any improvement on evening out his little melon. We had our first scan on April 2, 2012, to determine if he would in fact need to get a cranial remolding helmet, and after seeing he was at 12 1/2mm assymmetry (severe category) we ordered Cruz's helmet.

It arrived much sooner than we anticipated...a mere 10 days later Cruz was fitted for his helmet and it was definitely a tough day for us. Fortunately he got used to it and we did as well which made it easier having to put it on him every day.

On May 10th, we went in for our month scan and were excited to see how much his head had improved, but not expecting anything too crazy since our Orthotist told us on average there will maybe be 3mm improvement in a given month and some months none at all. Imagine our surprise when he came in after the scan and told us Cruz's head had improved from 12 1/2mm to 5 1/2mm - 7mm in one short month!

Two weeks later we had to go back in because the helmet was rubbing on Cruzer's head and Tim did another scan since we were there...there was no improvement since our one month scan and that was frustrating for us to hear.

At our appointment yesterday, I have to say I was very optimistic because his head looks so great these days. Tim took one look at little man and couldn't stop exclaiming how much his head has grown (you can tell because so much more of his forehead is visible). We took off the helmet and he continued telling us how great his head looked, it's shaping better and he could tell it had grown tremendously. You can see from the dirt marks (sounds gross, but it's a good thing) in the helmet that it's touching at a lot of points . 

Awaiting the results of his scan

After his scan, we nervously awaited the results. When Tim came back in an exclaimed it was only 1 1/2mm improvement (down to 4mm assymmetry), we were bummed, however, we are excited that there was at least some improvement which gets us closer to our goal of 2mm or less.

Here are shots of his head from our first scan compared to his scan from yesterday.

April 2, 2012 - initial scan

June 25, 2012 - 3rd scan

The improvement has been amazing and it makes us so happy that we made this decision to put Cruz in the helmet, even if it has been difficult for us at times.

Great Helmet News

This morning Cruz had his 1 month check up on the helmet's progress in helping our boy  get a symmetrical head. We have noticed definite improvement just by looking at his head, but were so happy to hear how much improvement he really had.

In the beginning of the appointment we were hoping to find out that he would be getting the cheek pad off his helmet. Originally our Orthotist thought it would only take a month to get his cheeks back on track. Instead, he determined that it wasn't quite where he hoped, so the cursed cheek pad will stay on for another couple weeks.

This bad news was overshadowed by the news of his head correction. When he was first diagnosed with Placiocephaly {an asymmetrical head}, he fell into the severe category and his head measured in at 12 1/2mm of asymmetry. After one month of wearing his helmet, the scan showed that he had 7mm of improvement, which means his head only has 5 1/2mm of asymmetry! We couldn't believe it and Tim was shocked at how much improvement he saw in only one month since the norm was 3-4mm improvement.

The goal is to get to 2mm or less asymmetry.  While we hope to see similar results in the coming month, we are careful to get our hopes too high. Often times, families will see good improvement one month and no improvement the next. . Let's just hope we fall into the minority and our little guy improves enough to get rid of his helmet just in time for the summer heat!

Fixin' His Flat

As far as an update on the helmet goes - we are making some progress.

• Little man started wearing his helmet a full 23 hours last week...and boy is his little head sweaty, and to be quite honest, stinky after we take that thing off for our one, measly hour off each night! The hubby said that I should be prepared, because that is how baseball, football and all helmets little boys wear smell...its normal. It's not normal, it's smelly...gross.
• Daddy and I are getting better at putting the darn thing on. I have to say it's quite hard to maneuver, especially with that cheek pad. You have to stretch it out at the bottom, scoop and swoop it on while making sure the cheek pad doesn't get too close to his eye. We can each take it off by ourselves, but haven't yet mastered putting it on on our own.

Loves playing with his toys

• This past weekend, he made it out on the town with mommy in his new head gear. During our Friday & Saturday night dinners out - we used the time as helmet-free time, so when I had lunch with Tess & the kiddos on Sunday, it was all helmet - all the time. Thankfully Tess had prepped the kids that their cousin was wearing his "baseball helmet" so all the questions were answered by the time we got there. They were all great with him and like touching his helmet and checked it out.

Cousin Dayvaney entertaining Cruzer

• First jerky question - so I was at the mall running errands with Cruzer and picked up a soda at the food court. The punk kid behind the counter asks "What's wrong with your kid's head?" My reply, "nothing, what's wrong with yours?" Ok, so I wasn't that smooth and I have to admit I was taken aback. Nothing is "wrong" with my kid's head, buddy. So after I stammered a bit I said, "nothing is wrong, we are just making sure his head is perfect." {note to self, prepare yourself for idiot comments for the next time, cuz there will be a next time.}
• Best part? I have had so many mommies come up to me in the grocery store, mall, you name it and tell me the story of their kiddo in a helmet and EVERY story has been positive. These mommies are all but raving about the experience. All confirm that it was so much harder on them then the babies, but not one has said they wouldn't have done it again if the situation arose.
• We haven't had a chance to get his helmet decked out yet, so I've made up with it by having some fun shirts with "helmet" messages. This has been Cruz's "thing" - he lets his clothes speak for him..

.

"You should see the other guy"

"Just fixin' my melon. Not quite ripe."

• Is it crazy that we think we can see positive changes already when the helmet is off? Well, what do you know, did your kid have a helmet? I didn't think so. :) Regardless, we feel that we can see some small change...and that alone makes us feel better...

A Couple Better Days...

I'm sure you saw my "woe is me" post from a couple days ago after the initial day with little man's helmet. I just feel like there is so much we should've been doing and trying so it didn't get to this point. I'm having a lot of mommy guilt over this whole thing...if he wouldn't have been laying inside me that way, if we had figured out something safe that we could stick in his crib to keep him from laying on his right side...anything to have prevented this. So as you can imagine it was a very hard day..mainly because I hated seeing our little guy so upset and hurting as he was adjusting to his new headwear. BUT I can tell you now that as the days have progressed its gotten much easier for the three of us. He is still his same happy little self {if not just a bit pissed after we initially put the helmet on}, but we are seeing his little smiles and giggles and he is figuring out how to roll from side to side a bit easier.

We haven't attempted tummy time yet...his head just seems too heavy...but he has been sitting up with our help. The schedule over the weekend was followed pretty close to what was given to us from the Orthotist {not perfectly by any means, but nobody's perfect, right?}. I attempted to put him down for bed on Sunday night, which was supposed to be his first night sleeping in his helmet and he fell asleep for about 1 1/2 hours and woke up screaming, which is unusual for him. I tried getting him back to sleep and it wasn't happening, so I made the executive decision, took the helmet off and rocked my little guy to sleep. Flash forward to last night and after we had taken the helmet off for our one hour of head kisses and cuddling time, we were supposed to put it back on before bed to attempt sleeping again. But we didn't. Fail. {Insert more "mommy guilt."}

I promised myself tonight we were going to do it, even if it means interrupted sleep until he can get adjusted himself. At this point, we've already started and we just need to stick to the schedule as much as possible, because the more we do, the sooner he will be rid of this awful little accessory.

What are the highlights of his helmet time? Well, we get to call him things like linebacker, boxer, and our little baseball player - because he does look like a little helmet-wearing athlete. And I've got some fun shirts being made celebrating his helmet-wearing, like "just fixin' my melon. not quite ripe." and "you should see the other guy." Oh, and of course, that his little head is getting better day by day which means he will be well-adjusted for the rest of his life {at least as well-adjusted as he can with the hubby and I as parents.}

So my crying over this situation has become limited and I realize that we need to make the most of this situation and in the long run we will all be better off because of it. And I don't care who you are...you have to admit, he does look pretty damn cute in this thing!

Floor time - of course the TV is catching his eye,
not his mommy making faces at him

Smiles!

Getting ready for some squash

Reading his favorite book - "There's a Woset in my Closet"

Today's The Day...

Little man got his helmet this morning. He hated it and his daddy & I were {are} miserable. This was by far one of the hardest days of my life....we hated seeing him so upset and crying and not understanding why we had to put that thing on his head. By the time I got him to day care and relaxing on the mat, he was giving me some small smiles...it helped, but not as much as normal with the little whimpers mixed in.

We started today with him having it on for one hour at a time. Tomorrow we graduate to two hours on/one hour off {none during sleep}, Saturday will be four hours, Sunday eight hours + naps and Monday we start 23 hours a day.

I know...and I'm putting it into perspective...it could be worse, so much worse. It's just that you never want your baby to hurt or be uncomfortable and that is absolutely what we experienced today.

Just say some quick prayers that he takes to it and quickly gets used to it. And while I'm asking for prayers, please say another that his has some good growth spurts and gets it off much sooner than the four-month average. xoxo

Accessorizing

Since finding out there was potential for Cruz to need a cranial remolding helmet, I've been digging around online and in the blog world to find out options to make his helmet unique...just like him. As I mentioned in a previous post {here}, one of the moms in the blogs I follow recently posted pics of her little cutie with a cranial helmet. I had to find out where she got it, it was so cute and different from everything I had seen. She quickly responded that they got her little one's helmet wrapped by Wrap Buddies. I immediately checked it out and was in love! Their work is super cute, but it's their story that is even more amazing!

The owner of Wrap Buddies has another company where he wraps Nascar helmets, etc. One day the father of a little guy who had a helmet came in and asked how much he would charge to have his son's cranial helmet wrapped. They had never done this before and he mentioned it normally costs $300-$1,000 to wrap Nascar helmets. The father mentioned that cranial helmets cost anywhere from $3,500-$4,000 and often times insurance will not cover the cost because they consider it "cosmetic."  He decided to wrap the cranial helmet for no charge and the father was grateful. Soon after word spread and his non-profit business, Wrap Buddies, was born. Now they have a "wrap party" once a month where parents can bring in their kiddo's helmets and get them wrapped for no cost. Such an amazing story and I'm so impressed when I hear stories of selfless people.

I contacted the company and found out that they do not have a partner in Omaha or nearby {they are located in Dallas}. Our Orthotist was very impressed by this organization when we told him the story and has reached out to try and become a partner where he will be able to wrap the helmets, prosthetics and wheelchairs for his clients. I am so excited that Wrap Buddies may be partnering here in Omaha so they can provide other parents with this unique feature to customize their children's helmets, etc. Unfortunately, he more than likely will not become a partner until well after we get Cruz's helmet. So.....

I'm trying to talk Nick into a family getaway for a couple of days to Dallas. On May 4th, Wrap Buddies has another wrap party and I really want to get little man the custom helmet he deserves. I also would love to meet the owner of Wrap Buddies and some parents going through the same thing we are experiencing. Keep your fingers crossed that we can make it work....