Trick-Or-Treat

It has been a while since our last check-in. Everything is going great with the helmet. RAD has been staying with his grandmother the past week. Today, when we took off his helmet, I could definitely tell a difference in the shape of his head. Next week, we get his head scanned again. I can’t wait to see the results! We are still aiming for a goal of Christmas to be done with the helmet. It has been so much already. But we’ll do anything for our little linebacker!

Today is also Halloween. It was nice to be able to take RAD out and not have people stare or comment on his helmet. It just felt like it was part of his costume. While nobody has been rude to us so far, it was a nice break anyways. I have noticed that when his helmet was plain white, we would get an “Aw” of sympathy. An “I’m so sorry.” In which we would follow up with “I’m not! Its ok!” Since we have painted it, now we get “Aw! That’s so cool!” Yeah – I guess it is. I mean, if he HAS to have a helmet, I guess we did get him a cool one. I still wish he never had to have it.

He is still just the same happy, easy going baby as before though. He is starting to try to crawl and is SO strong. He runs, not walks, RUNS all over the house in his walker. He is getting so big. He will be 6 months soon. Love these two joys so much!

Happy Halloween!

halloween

Whew – That Smell!

Ok y’all. Time to get real.

This helmet (and his hair) STINKS! I heard that a lot. That it will start to smell, but dang!! It’s a full blown STINCH! So how do we keep it at bay??

1.) Clean it. EVERY. NIGHT. I mean it. Clean it with rubbing alcohol and if at all possible put it outside to dry for the hour that you are able to keep it off of your baby’s head.

2.) Wash their hair. EVERY. NIGHT. The only thing that we’ve found that has helped is Mustela. It does not have a “baby” smell at all, which is hard to get used to, but it definitely kills the smell. I found it on Amazon and also Target, but I’m sure they sell it in other stores as well. They are about the same price between those two. We use the 2-in-1 shampoo and body wash and also this no-rinse fluid for those LONG days when we’re unable to do a full bath. Aside from keeping the smell away, it has also helped cure his cradle cap, as well as his little patches of Eczema. So I would say a win-win-win!

3.) Breaks. So yes, you should keep the helmet on them for 23 hours. However, as they are adjusting it, it is OK (according to our technician) to take some mini breaks to wipe away the sweat. Basically, take the helmet off, wipe it out with a dry towel, and put it back on. I would recommend for you to ask your own doctor/technician, but this is what we were told and it has helped!

3 week check-up

Yesterday was RAD’s 3 week check-up at the clinic. The tech took some measurements of his head and said everything looked great! We will go back in 3 weeks for another scan. I’m hoping for some great news! My goal is to be done by Christmas, but we will continue as long as we need to! We are all pretty used to it by now. In fact, I think he looks so weird without it now! I have started to see some improvement, so I know it is working! It is definitely a labor of love!dsc_1345-2

Plagio-what?!

That was my first thought. How can I fix the issue if I don’t even know what it is or how to say it? So here’s how I understand it – in a super non-medical, easy to understand way.

Plagiocephaly – or “Flat Head Syndrome” is very common. Since the “Back To Sleep ” campaign started, it has become more common. It affects almost 1 in every 2 babies (about 47%). The most common is Positional Plagiocephaly – meaning that their head is flat in one spot due to the position they prefer to lay in. Normally babies develop Plagiocephaly because they spend too much time in one position. However, other factors could contribute to this as well, such as multiples or how the baby was in the mom’s uterus.

Brachycephaly – is a type of Plagiocephaly and is when the entire back of the baby’s head is flat and the head is very wide. The forehead is often bossed or prominent on both sides, and the height of the head is excessively high. Brachycephaly without asymmetry accounts for about 1 in 10 of the children. A pattern of routinely sleeping on the back can cause brachycephaly. The head can flatten uniformly which results in a wider and shorter shape. Asymmetrical Brachycephaly is a type of Brachycephaly where the head is both wide and asymmetrical. This is the second most common type of deformity.

Torticollis – is the tightening of one or both of the main neck muscles which causes the baby to turn and/or tilt the head in only one position. This causes flattening of the same side of the head. Torticollis is often associated with Deformational Plagiocephaly since the baby cannot comfortably lie in all positions. Usually, treatment with Physical Therapy and a home exercise program as soon as possible is necessary.

RAD did not have Torticollis. He had great range of motion in his neck. He did, however, sleep through the night at a month old, and for 6-8 hours, and by 2 months he would sleep 12 hours a night. A blessing, but also a big part of why he developed Brachycephaly. He also HATED tummy time. I mean, this boy could SCREAM. He would roll right back over as soon as he was on his tummy.

It is also worth mentioning about Craniosynostosis. This is when the plates in the babies skull start fusing together prematurely. When this happens, it causes the skull to expand in the direction of the open sutures, causing an abnormal head shape. In severe cases, this condition can also cause increased pressure on the growing brain. There are 4 different types of Craniosynostosis, based on which sutures start closing together. I won’t go into all the different types, but there are several clues that may have caused you or your doctor to suspect that your child has Craniosynostosis. A misshapen head is usually the first clue. The soft spot, may or may not be open. This is why we were sent to a neurologist. Our pedi could not feel RAD’s soft spot, which alerted him to possible Craniosynostosis. At this time, his neurologist doesn’t suspect any issues since he is still developing and his head is growing proportionately. We will have a follow-up in December to make sure he’s still progressing.

Hopefully this helps make these words not quite so scary. I know I was scared when we first heard them. But once you understand that basically, your baby just has a flat head, it makes it not so scary.

What’s most important is that you know that your baby’s flat head is in no way your fault. And is absolutely did not happen because you “did not hold your baby enough.” That is one of the most ridiculous things I’ve ever heard so far in our helmet journey.

Rock on Helmet Mamas (and Dads)! You got this!

From 0 to 60

Or 1 to 23.

I’ll be the first to admit. I was not sure how this whole helmeting thing was going to go. I mean, RAD didn’t even like wearing a hat during the summer to keep the sun off of him. How was wearing a helmet for 23 hours a day going to work?! I was afraid that this would be the longest, hardest 5 months ever. When my husband took RAD to pick up the helmet the first day, it was nothing but tears. Well, screaming and tears. And I just knew that the first full day would be the exact same. Well, I was about 99% wrong!

There was some fussing when I put the helmet on or off. RAD does NOT like sudden sounds or movements (unlike Big Sister who LOVES being scared) and the Velcro strap is right above his ear. So that made putting the helmet on and off a little difficult. But we kept on. The first day is an hour on, and hour off. And boy, by the end of that hour he was READY for it to come off. I could also tell that he was more tired than normal. I’m sure its physically exhausting. One minute you’re having just to hold your head up, and the next your mom sticks this helmet on top and you have to be even stronger! The helmet is not really heavy. I think something like 6ounces. But for a 5 month old, that’s heavy! As the day progressed, I could definitely tell that he became more and more comfortable with the helmet.

Day 2 was the hardest for me. We have always kept to a schedule for our kids, especially when they were babies. It just makes like SO much easier for us. The second day, they wear the helmet 2 hours on/1 off. And still not sleeping in it. This was the roughest. Only because he would be ready for a nap, but he would have like 30 minutes left of wear time. He would be crying because he wanted to helmet off and because he was tired. UGH. Glad that day is OVER.

Day 3 was a little better. He was pretty comfortable in his helmet by now. He wore it for 4 hours on/1 off today. He also got to start sleeping and napping in his helmet. This made things much, much easier! He actually slept through the night no problem the first night! Here is where that whole routine schedule comes into play again. We just kept to our routines and it was just a normal bedtime for him. He wasn’t uncomfortable or anything! It was a relief!

Day 4 increased wear time to 8 hours with 1 off. Every day is a little easier for all of us. We’re now on Day 5 and starting 23 hour wear. I can’t believe how quick we got to full time wear, but its going great! He had an adjustment on his helmet today since he is settling into it. It also keeps falling into his eyes a little so they just adjusted it. So cool that they can fix those things right away.

When they say it is harder on the parents than the babies, its true. Its so hard seeing him in this helmet. But I know it is for the best and is not hurting him AT ALL. What kills me is not being able to kiss his forehead. Always having to kiss that cold, hard plastic. Make the most of that hour off each day. Get those kisses in!!!

Day 1

Day 1 was rough. Unfortunately (or luckily, depending on who you ask), I was unable to be there the actual day that RAD got his helmet. He also got it at 3pm. So really, his Day 1, wasn’t until his second day. But, according to my husband, those 3 hours were probably the worst of RAD’s short little life. He is an extremely laid back baby. Hardly ever cries. But boy if something makes him mad, watch out. He will go from 0 to 60 in less than a second! He reminds me so much of my grandfather in that way. So those first few hours were NOT good. For anyone. His REAL day 1 was a little better. He would fuss when we took the helmet on and off. But I could also tell that as the day went on, he would fuss less.

When you begin with the helmet, you start with an hour on, an hour off – and no sleeping in it. You will gradually increase in wear time. By the 3rd day, your baby will start sleeping in the helmet and by the 5th day, they will be in it for 23 hours a day, with an hour off for bath time and cleaning the helmet. There are a couple of reasons for this:

1.) Obviously – so the baby gets used to it.

2.) You release half your body heat through your head. Well, the helmet will insulate their head, making this close to impossible. So, by weaning them into the helmet, you will train their bodies to release their heat through the rest of their body. Crazy. I know.

So, our “real” Day 1 was spent at home mostly, except for a couple of errands. And with him in a diaper because he gets so hot already.

During Day 1, was also our first “public appearance” in the helmet. I had to take Big Sister to school. I debated if I wanted to put RAD in his helmet before or after drop off. On the one hand, I needed to put him in his helmet. On the other, I knew people would stare and point and I was not ready for that. Or I didn’t think I was. People can sometimes be unintentionally cruel and I didn’t want to deal with that at 7am in the morning. But, I put my feelings aside and knew that putting his helmet on him was the right thing to do, for HIM. What happened next was exactly what I needed.

I was walking Big Sister into school. Had RAD on my hip as we walked in. I tried to be brave, but I felt myself looking down at the ground much more than usual. And then I saw the principal of the school. He had the biggest smile on his face as we walked in. And as soon as he saw us, he came right over to us and began asking questions. And not in a condensing, judging way. But an actual curious, caring way.

Now, I’ve always said that God brings people in (and out) of your life at a certain time and for a specific purpose. It is our first year at this school, and Mr. Principal’s as well. If the whole reason that we were brought to this school was a 2 minute conversation outside the gym, it was completely and totally worth it. He was able to bring such calm and strength to me in a way that he will never know, and I am extremely grateful for him. (Don’t worry, I wrote him and email letting him know how grateful I was for him!)

Overall, Day 1 wasn’t as absolutely horrible as I thought it would be. I am excited for this adventure and where it will take us and to see my son grow and thrive!

Finding The Right Fit

 

After our diagnosis and referral from Dell Children’s Hospital, we were given 3 options for cranial helmet clinics. Our 3 options were Hanger, Cranial Tech, and StarBand. We were also told “we have no recommendation, its totally up to you.” Yikes. Ok.

Here’s what I can tell you about the difference in the 3 of them. Nothing. It’s like saying “Do you want a hamburger from McDonald’s, Burger King, or Wendy’s. They’re all virtually the same, it just depends on your preference, who will accept your money, and how far you want to drive on a regular basis. Also, there may be other clinics out there as well, but these were the 3 that were offered to us and from what I can tell, the three most popular/recognized clinics. Also, you will see a specialized technician. They are specifically trained in helmeting.

We wound up choosing StarBand because it was In-Network for our insurance, and also was considerably closer to us than the other locations. And, when you will have to be going back frequently for check-ups and adjustments, a 30 minute drive is a lot better than an hour!

I was extremely nervous when we went for RAD’s initial scanning. I had NO idea what to expect. Y’all. It’s so simple! The put this little stocking on him, which honestly makes him looks like he’s about to rob a bank. You (Yes, you are with him the WHOLE time) lay him down in the scanner. It takes all of about 10 seconds and you get a full 3D image of your baby’s head on the computer. They will take a few pictures. And that’s it. Really!!

We went over his measurements and the technician agreed that he needed a helmet. Something else that I was not aware of is that the FDA strictly monitors these cranial helmets. WOW! Once you have the scans done, you only have 2 days to place the order because the baby’s head grows so much! Of course, you can take your time to discuss if you want to order, you will just have to rescan if it is over 2 days. We already knew  that we wanted to proceed, so it was a no brainer to order it right away. Once you order it, they have 12 days to get the helmet on your baby. Crazy, but reassuring.

They also have SEVERAL designs you can order. For boys and girls. We decided to go with plain white because we will be getting his helmet painted! I found SO MANY people that are willing to paint these helmets or vinyl wraps too. Whatever your preference is. Some will even do them for free! Such a blessing. I was told to reach out to local painters, tattoo shops, etc.

So that’s it! That’s all there is to scanning, fitting, and ordering the band. Not scary at all! What’s scary is the unknown, and that’s ok. But this is so much easier than I thought it would be. Have no fear mamas and dadas. it will be ok!

Here is a video of what the scanning looks like. In the beginning it shows putting little “stickys” on the baby’s face. This was not part of our experience, so I don’t know what they’re for. Other than that, this is basically what our experience was like!

Resources

As I said before, I had to do a TON of research on my own, and it was actually really, REALLY hard to find any. The ones I did find were amazing. But, it took a while to find them. Here is what I’ve found that has helped me during our journey. Please feel free to comment with any sites or groups in your area or online that you have found that have been beneficial for you as well!

Facebook Groups – This is where I have found the MOST support. I am able to connect with parents from all over that are going through the same thing that we are and everyone has been super supportive!

Plagiocephaly-Support/Information/Advice

Plagiocephaly & Torticollis Support Group For Texans

Plagiocephaly and Torticollis Support for babies in Cranial Helmets

CAPPSKIDS.ORG

Medical Resources – Like I said before, nobody really talks about “flat head syndrome.” So I read a lot of medical sites about what Plagiocehpaly/Brachycephaly really was!

From Boston Children’s Hospital

From Seattle Children’s Hospital

Dell Children’s Hospital – These people are AMAZING. Everyone we met were absolutely the sweetest, and most caring people. Our pediatrician referred us here, and I’m so glad that we went with them.

Fun Stuff – If you have to wear a hat for 23 hours a day, it better look great! There are limitless things you can do with your baby’s helmet. You can order it with a design or solid color. Do stickers yourself. Paint yourself. Sticker packs. Signatures (like an arm cast). Vinyl Wraps. Spray paint. Airbrush. The sky is the limit! Here are some resources that I’ve found that can help make your helmet fun!

Rockin’ Topz – Local to San Antonio, Texas; Really, really awesome people who want to give back to their local community.

Bling Your Band – Sticker sets for helmets. I have found coupons for this site on RetailMeNot.com

Wrap Buddies – Another Free Service to helmet babies!

I’ve also heard you can reach out to local vinyl shops, art studios, and even tattoo artists! And of course, don’t forget good ‘ole Pintrest for some awesome ideas too!

 

 

So It Begins…

So a little background on our story first…

Pregnancy and Labor were completely normal. Went full term. Natural delivery. Nothing irregular. After 14 hours, “Radical RAD” was born.

I first noticed that our son’s head was a little more flat than normal when he was about a month old. We started making sure we rotated him if he was laying on his back playing. He absolutely LOVED sleeping on his back. We called it the “Touchdown” position. Arms straight up over his head, completely flat on his back. And he was a great baby. I mean, he slept through the night very early on. It was a blessing, and although we didn’t realize it at the time, it was also contributing to his condition.

At his 2 month checkup, I brought our son’s head shape to his Pedi’s attention. He agreed that it did look more flat than normal, but felt that it was nothing that we should be concerned about. He made sure we were doing the appropriate amount of tummy time, rotating him on his sides, and keeping him off his head whenever possible. All things that we were doing already. We all thought his head would round out as he started rolling around, which is what normally happens.

I went back to work when he was 13 weeks old. It was a couple of weeks before my mom saw him. When she did, she felt that our Ryder’s head was not improving with the therapy we had been doing, and in fact was getting worse. Now we could tell that his head wasn’t getting better, but couldn’t necessarily tell that it was getting worse.

That night, I sent some pictures to my best friend, who also happened to be a Pediatric ICU Nurse. She agreed that it was concerning and we should see a doctor as soon as possible. We made an appointment with his Pedi the next morning.

He agreed that his head was worse, but what was even more concerning to him was that he was unable to feel his “soft spot” at the front of his head. He sent us to see a specialist at Dell Children’s Hospital. It took 3 weeks to get in, and were the longest three weeks of our lives. We were examined at Dell and they were also unable to feel his “soft spot,” but were not overly concerned seeing as how he was developing and growing appropriately. She did recommend a cranial helmet and a follow up in 3 months to re-examine his soft spot.

We got into a helmet clinic (we chose StarBand – more on that later) within a few days. They scanned him and agreed that he would be a good candidate for a helmet. The technician also said that she COULD feel his “soft spot.” She said it was SUPER tiny, but that it shouldn’t be anything to worry about.

And so here we are. We will be getting his helmet in a couple of days and it is a bittersweet thing. I am so glad that we are getting him fixed, and I know that he will never remember it and it won’t hurt him at all. However, I hate that he will have to wear one at all. I am grateful that all it is, is a helmet and that it could be MUCH, MUCH worse.

I hope that you find this blog helpful and a sense of support as well. Thank you for sharing in this journey with us and I am here to help in any way possible! img_7557