Goodbye Helmet!!!!!

Here are links to the previous posts regarding the cranial molding helmet.

1st post, 2nd post

Luke had his very last helmet appointment recently which consisted of the final scan.

They placed the sock like thing on his head and a few minutes later- voila- a 3D image of my baby's noggin.

(the red cheek is from eczema- that's a whole 'notha post)

They went over the numbers with me and I actually wasn't too impressed. The main number that I wanted to see decrease is the one that compares the length of two diagonal lines that form an "X" with the baby's head. (View the 2nd post for a diagram) A perfectly symmetrical head would have a zero difference in the length of the imaginary lines (of course no one is perfectly symmetrical)

At his very first appt there was a 13mm difference. You have to have over a 6 for insurance to cover a helmet so we were way above that.

At the next scan it was an 8. Much better!! But the orthotist and I decided to make another helmet hoping to get him closer to 6.

Yesterday it was an 11?! I have no idea why it's still that much of a difference but it is still better than 13.

The issue with Luke's head is the part that needs reshaping protrudes. You can't really fix that because you can't force his head in on that side. All you can really do is guide the areas that don't stick out enough trying to get the skull to even out.

Here is his before and after.

The left scan he is 7 months- the right side he is a little over 16 months.

You can see how his head still sticks out a lot on the right but the back left did round out a bit. The really good thing that happened is the width to length radio is much better. He was 3+ the standard deviation before the helmet and now he is +1. Basically my baby's head is longer from front to back than it was so that's good, but the right side sticks out a lot so that's bad.

You can also see in the picture on the right side image that his left cheek protrudes still because the left side of his head had shifted forward. Most people don't notice it but his left cheek is more "poofy" if you will.

I'm glad we did the helmet because although it wasn't quite the result I was hoping for- I do believe that it kept it from getting worse. If we had not done the helmet the left side of his skull would probably kept migrating forward.

His ears are lined up more than they were but the left ear is stills more towards his face.

We're glad the helmet is no more! Luke especially- I think he secretly is trying to destroy it- it gets it and starts throwing it all over the house. He'll bring it to me and I'll say "what? Do you want me to put it on?" and he shakes his head and runs away giggling.

Now begin the bumps and bruises as he learns his head is no longer as protected! He's already developed some pretty ugly bruises on his forehead. Live and learn I guess! :o)

5 months and then some...

5 months ago Luke received his cranial molding helmet (you can read the post about it here) He has adjusted beautifully about it and doesn't seem to mind it.

We have adjusted to. I'm used to cleaning it everyday and giving him daily baths because his head smells like dirty, sweaty feet. Ew.

Although he has been spared many bruises due to the helmet- it has causes me a few bruises and busted lips. But I don't mind.

So for 5 months he has worn it about 23 hours a day (give or take 30mins)

We have enjoyed decorating it with different themes. He's had puppies, trains, cars, animals, dinosaurs, mickey mouse, and guitars to name a few. Most of the time it has his name on the front with stickers but it still throws me off when complete strangers say "Hi Luke! Nice helmet"- for a split second I'm like "how did they know?...oh yeah...the stickers"

I've had a lot of people come up to me and say "My little Tommy wore one of those!" or "my niece wears one" etc. I've had some people ask why he wears it and I don't mind telling them. I can tell some people want to ask but don't because maybe they are unsure of my reaction. But when I sense that someone is curious but unsure I usually end up sharing "Oh he was just flat on one side because he likes to suck those fingers and always turned to the left so the helmet is helping to round out his head"

Kids are the funniest with all kinds of statements and questions.

"Is he a football player?"

"Is he an astronaut?!"

"Why does he have that?"

"Is that so he doesn't get hurt if he falls?"

"Do you drop him a lot or something?"

Haha (actually I did drop him once tripping on a rug and the helmet did help him!)

I love their curiosity!

One woman who stopped me in at the grocery store once was so concerned she was on the verge of tears. She said "oh my- poor dear- please tell me what I can pray for him about" and I tried to reassure her that he's ok but I will always welcome prayers.

They can never give an exact time frame for the helmet because it depends on growth spurts and of course that is not predictable. If the child grows quickly the quicker you would see the results since the helmet is sort of a mold that you want their head to fill. Originally they guessed maybe 3-4 months for Luke.

About a month ago the Certified Orthotist (CO) said we were getting close to the end especially since Luke was approaching one and the older they get the less pliable their noggin' is. I thought "yay- you'll have it off by your birthday!!!"

I could tell a different in his head. However his ears are still not lined up but better than they were. And although his head rounded out more around the lower part of the back of his skull the higher part closer to the crown of his head still seemed pretty flat. But I figured maybe that's the best we were going to get.

This morning when I got Luke out of his crib I said "Today is the day! No more helmet!"

After taking Nathan to daycare Luke and I sat in the waiting room before his final scan.

He was clapping- he does it really slow and soft- so cute!

The scan went well and Luke sat fairly still (if he moves too much they have to rescan) and after the CO went over the ratios and percentages he discussed them with me.

A few of the measurements were now in the satisfactory category but the reading that is the most important is comparing the length of two imaginary diagonal lines. One runs from the front left forehead to the back right of the head (line A). And the other the front right to the back left (line B).

(This isn't the scan- I made this in 'paint' to show what they measure)

If the head is uniform lines A and B would be the same length.

For a helmet to be considered there needs to be at least a 6mm difference. When Luke was first measured the lines were 13.3mm different. Today they were 8mm. Much improvement but still not the 6 or below we would have liked to see.

Carlos, the CO, gave me the option of either stopping treatment or continuing. He said he would have liked to see a 6 or even a 7 instead of an 8 but that we were talking millimeters here. If I chose to continue they would make Luke a new helmet at no cost using this latest scan since he has almost outgrown the current helmet.

I know the older the child gets the helmets are less effective because their skull is firmer so at this point I was leaning towards stopping treatment like we originally planned. I had in my mind that maybe this is the best results we are going to get.

But then Carlos turned his laptop towards me and I saw the outline of Luke's head and immediately my decision was made. I saw how his left cheek still puffs out more than the right. The right side of his head is rounded yet the left side still looks flat. Overall it looked like an oval that someone had slightly squished on one side. It was definitely not uniform.

I thought of what Marcus would say and I knew he would say "if we've gone this far we might as well keep going and do it right" so I told Carlos I want a new helmet made and to continue treatment.

He went on to explain to me that as his growth slows a little bit he will probably have to have the helmet on at least 5 more months to make a difference.

It got me thinking about Luke's growth. I said that he actually is probably about to get another growth spurt because he hasn't really had one since he first got the helmet. He grew SO fast from birth til about 7 months but in the past 5 months he has maybe only gained a pound and his clothing size hasn't changed.

Carlos said he can compare the circumference measurements and it turns out that his head has increased in size only 1 centimeter in the past 5 months. That's not a lot of growth. He agreed that he might have another growth spurt soon making the helmet even more effective.

We have gone 5 months already...what's another 5 months in the grand scheme of things? Not a big deal. We might as well see it through.


Benefits of continuing treatment...

-Better results in the end with head shape
-Give the ears more of a chance to line up (the left ear is still closer to his face by maybe 1/2 an inch or more)
-He's learning to walk and falls a lot so added protection (what parent doesn't like that?!)


Disadvantages...

-Washing helmet and his head every day (not a big deal but one more thing to do daily)
-Being "picked on" by other toddlers wanting to get a better look (was an issue in the beginning at daycare but it has got better recently)
-Hair not growing on the sides of his head so he's getting a mohawk...hahahaha. It's true! This is SO not a big deal...I'm sorta of kidding putting it on the disadvantages list but I was looking forward to seeing a poofy head of red hair instead of the comb-over he's currently sporting :o)
-More bruises and busted lips for mommy and whoever dares to get in his way heh.

I figure at least it will keep him warm in the winter months?

So here's to a round head no matter how long it takes to get there!

Next week he'll be sporting a new dark blue helmet!

Hey- maybe it will match my bruises :)

(combover)

In which I ramble about my flat headed baby...

Nathan loved his paci. LOVED it. For 2 years.

Luke? Nope.

What does he love?

His fingers.

I bought all kinds of pacifiers for him when he was born. Knowing and hoping that he would love them as much as his brother. I knew they reduced the risk of SIDS (or so I have read) and I also thought it had a little to do with why Nathan slept through the night quickly. Also, I would rather have my child addicted to something I could take away instead of the dreaded thumb. Cuz you can't cut their thumb off. Well you could. But. How Horrible. Ok moving on....

I offered Luke a paci when he was two weeks old (I waited due to bfing) and he considered it for a day or two and then started spitting that thing out, throwing those fingers in his mouth and giving me a look that was like "Mooomm...why are you giving me this plastic thing when I have these two wonderful fingers on this hand of mine that I can suck on anytime I want?"

So I was like "hmm. He's a finger sucker. I guess it's better than a thumb" Oh well.

It took us a little while to realize he didn't just suck his fingers. He sucked the fingers on his LEFT hand. Always left. ALWAYS.

Everyonce in a while, if his left hand is occupied holding a toy, he'll stick his right hand in his mouth and try out the different finger combinations. But he can't ever seem to find those middle two on the right hand and after a few seconds of trying you see him realize "Oh, wrong hand" and pop- in goes the left hand fingers into his mouth!

This started to create a problem that started off small and became a much bigger one.

A flat spot.

Since he was always turned slightly to the left for the fingers- he developed a flat spot on that side.

(at 4 months)

It kept getting worse and positioning didn't seem to help.

At his 4 month appt I mentioned it to the pediatrician and he said "oh, he's fine"

When Luke was 5 months we were beginning to notice that his left ear was slowly migrating closer to his face and starting to stick out more and we got more concerned.

At his 5 month appt I once again asked the pediatrician if Luke might need a helmet. He said "eh, they only do that in severe cases" and didn't even look at his head closer. The whole appt Luke was laying on his back- so the doctor didn't even look to see that his ears were misaligned or that the flat spot was getting worse.

Finally, with a friends suggestion who has been through this with her twins, Marcus and I decided we need to look into getting a helmet ourselves.

I knew if we didn't I would regret it every time I looked at that misshapen head of that little boy I love so much. Even when he grew up and was a man- I could easily see myself sighing and wishing we fixed his head when it was still pliable. Plus- what if he needed glasses? And his ear was misaligned? They would need to be specially made. And headsets? Those wouldn't work well.

So we did what my friend recommended. Contacted First Steps and set up an evaluation with a Physical Therapist and Developemental Specialist.

I learned a lot at the evaluation and I'll leave that for another post but they did recommend that we look into a helmet and referred us to a neurologist. (He also has some issues with his right side since he prefers his left so much)

Today I took Luke to his appt with the neurologist. Just me and my baby.

While we waited for the doctor in the exam room I took a few minutes to nurse Luke so he wouldn't be fussy when the doctor was in. I then took some time digging some wax out of his ear and picking dry skin off of him (what? am I the only one that picks at my baby like we're primates?)

Then we sat and played while we waited. I did different things that made him giggle. I used my hand to pretend I was attacking his face which he LOVED.

And then I realized something sad and I was shocked. Shocked at how little time I spend playing with this adorable baby of mine. The mom guilt thing? I'm pretty good about not having issues with that but it hit me pretty hard when I realized this.

How could I not spend a lot of time playing with him? Well- I work. And I have an older child. And most of the time I am with Luke I'm nursing him. At home after he's fed I sit him down so I can do laundry or clean or wipe my oldest child's behind or wash cloth diapers or make dinner or or or or. Of course I smile at Luke and talk to him here and there. I sometimes put him in the high chair to play while I make dinner.

But to just sit and play with him? Find new ways to get him to laugh? Talk to him?

I definitely don't do that enough.

Maybe it's part of having a second child. And maybe it has a lot to do with my working outside of the house. But it's going to change. I'm going to play with that little boy much more- they grow SOOOO fast it's just insane.

I realized I'm stuck in a "do for" baby and not "do with" baby phase.

Anyways...

Back to the doctor visit...

Luke's doctor was very nice and took time to answer questions.

He said that Luke definitely needs a helmet but first we had to get some xrays. The xrays are to rule out craniosynostosis which is when the plates of the skull fuse to early. It can also cause a misshapen head. We're 99% sure that it's a positional issue but it's required to rule craniosynostosis out before we can proceed for the helmet.

The doctor said he'll most likely have a helmet for a few months and that he's at the ideal time to get one. Too young and their necks aren't strong enough for one. Too old and their head isn't as pliable and it's harder to fix.

The doctor gave me two referrals- one to get the necessary xrays and another for the helmet.

They said we could go to the hospital right away to get the xrays and I decided that was the best thing to do since we rarely make it over to that area and of course we want to get the helmet on him asap.

I took Luke to the car first to get the boba baby carrier (L O V E that thing!), strapped the little wiggly worm to me, and we walked a little ways to the hospital. We registered. Luke took a nap in the carrier. Then got the xrays (which he screamed during since he had just woken up and didn't want to be held down)

Now the next step is his appt in a few days to get fitted for the helmet. The neurologist will look at the xrays tomorrow and call me to let me know for sure it isn't craniosynostosis and then we're clear to proceed with the helmet.

After the fitting it will take 3 weeks for them to custom make the helmet and hopefully soon he'll have a lovely round head and ears that line up! Every time I look at that perfect head I'm going to be so glad we did this.

But honestly- I'm NOT looking forward to it although it's necessary. Nursing a baby with a hard helmet on? Not gonna be fun. Plus all the "what's wrong with your kid?" comments and stares. But I'm sure we're all adapt to it.

He'll have to wear it 23 hours a day. Just an hour off to give him a bath and clean the helmet.

Sometimes people pay professionals to paint the helmet. It's something fun I would like to do myself! I'll have to look into what paint to use etc.

(taken today)

I was joking with a friend that although Luke's head will be protected- the rest of us will most likely have injuries because of Luke accidently hitting us with his helmet head.

Then I'll return to the doctor with a boy with a perfect head but maybe I'll be all bruised and misshapen and need a helmet myself :o)