Cranial Plagiocephaly–Saying Goodbye!

This morning, Kennedy had her 12-week scan done at STAR.  I was so excited to take her, since I was pretty sure this would be the end of our time with the STARband.  Kennedy has been wearing her helmet for three months – quite a long time if you ask me!  I’ve been eager to be completely finished with it and to know that her flat-head problems are fixed!

We were happy to hear that, in the last 5 weeks, Kennedy has gained another 2 millimeters of head circumference!  This brings her total from being 14 mm “off” to only 4!  We had only hoped to reduce Kennedy’s head-flatness by half, so to make a 10mm gain is very exciting!

Above is her final scan.  Her original measurements are in red, and today’s growth is shown in blue.  You can see how much roundness she achieved in the back right and in the top left.  Andrew and I have been commenting lately on how perfectly round her head looks, and this scan shows just how perfect it is!

After taking lots of “before” and “after” pictures, we were officially finished with our care at STAR.  No more helmet for Beanie!  I’m surprised by so many things in this process – how quickly the time went, how wonderfully the STARband worked, how extremely flat her head was in the beginning!  I’m so glad that we decided to have her fitted with a STARband.  Looking at the before and after graphs and photos is amazing!

This is Kennedy’s head BEFORE using the STARband.  You can see the almost diagonal appearance of her head.  It is definitely not pretty and round, and the flat spot in the back right is very noticeable!  I can’t believe I couldn’t see it 12 weeks ago when we started this process!

Here is her beautiful, round AFTER graph.  Her head looks perfect, doesn’t it?  When you compare the two, it is astounding how different her head looks! 

Our wonderful orthotist compiled these before and after photos for me and sent them over.  The first is a top view of her head – which really shows how round her head became as a result of her STARband!  The second is a shot of her face before and after.  The shape of her head was causing her left eye to squint, and you can see how flat the left side of her forehead was.  I find these photos fascinating, as I was really blind to the fact that there was a problem when we started this process!

Our next big item on the agenda is to take Kennedy to get some professional photos done, to celebrate her beautiful, new head shape!  Back in December, we had her dedicated at church.  As her dedication gift, my mom and grandma got her a gift certificate to have photos taken at Sears when she got her helmet off.  I remember thinking our celebratory photos would never happen – that March was so far away.  Time went by so quickly, and I am so happy that we made the decision to go with STAR!

project 365: week 99

February 16, 2011:  Kennedy had a follow-up for her helmet.  Everything is going great, and hopefully we only have another month or so of her needing it.  I can’t wait until our days in the STARband are over!

 

February 17, 2011:  We had a few days of sunny, warm weather, and the kids and I took advantage of it by going for lots of walks and playing in the back yard.  Bennet loved getting to see his outdoor toys, since we haven’t been outside in quite a while due to the winter weather!

February 18, 2011:  One of my favorite people in the world, Ashley, celebrated her birthday this week!  The kids and I got to take her to lunch on her actual birthday, and we also were invited to a group birthday dinner to celebrate with her, her boyfriend, and lots of her friends.  This was the night that I fell and busted up my legs – but other than that, we had a great time!

February 19, 2011:  We didn’t take many pictures on this day, minus the ones I already posted of my injuries and my visit to Patient First!  Ashley and Greg were sweet enough to stop by to visit with a chicken pot pie and a beautiful bouquet of flowers!  I took a floral arranging class a while ago at Whole Foods, and I was able to use my learned skills to make two gorgeous arrangements out of the bouquet!

February 20, 2011:  I went out this week and bought these little, elastic hair ties for Kennedy.  She has so much hair that pulling it up on top is really the only thing we do with it these days!  I want to put it in pigtails, but my foot/knee injuries have slowed that down a bit!

February 21, 2011:  Bennet took my headband and kept singing, “I’m a pretty princess!  I live in a castle!”  Andrew was so proud!

February 22, 2011:  I’m participating in my first sew-along!  Jess at Craftiness Is Not Optional is walking us through making The Charlotte Dress.  I’m going to use it as Kennedy’s Easter Dress.  I’m so excited!

cranial plagiocephaly–a great report!

Yesterday morning, Kennedy and I headed to STAR for her 6-week follow-up scan.  (Technically, it was closer to 7-weeks, since her appointment got cancelled last week due to the snow.)  I was so excited to find out how much her cranial plagiocephaly has improved, since I can really tell a difference when I look at her head!

They loaded her up in the STARscanner, and scanned her head.  The report was great!  Kennedy’s head has gone from being 14.3 millimeters off, to only 6 millimeters!  Lisa, our orthotist, told me that the goal they set is only ever to “half” the number of millimeters, so the STARband has really been working – reducing her measurements by more than half!  Any “flatness” measured at 6 mm or below is considered within normal limits, so at this point – Kennedy’s flat head is considered to be corrected!

The scan above is the one from yesterday.  You can see the inner circle, in red, which is her original scan (14.3 mm.)  The blue line is her current measurements.  The top left quadrant is the front of her forehead – you can see that she has had some growth there.  The bottom right quadrant is the flat spot on the back of her head – she has had some major growth there – so exciting!

She still needs to wear her helmet for another 5 weeks or so, because her skull plates need time to harden in their new position.  We certainly wouldn’t want her head getting flat again – so we’ll wait out the next few weeks!  My plan is to make sure she wears the helmet at naptimes and at bedtime, and that she keeps it on around the house.  If we go out somewhere, I think we’ll leave it off – so I can indulge myself and put pretty bows and headbands in all that gorgeous hair!  Last night, we went to the mall to take Bennet to the Lego Store and to have dinner – and I took her sans helmet.  She looked so pretty with her little, pink bow in her hair!

We’re so thankful that Kennedy has had such success with her STARband, and we’re so glad we put her in it.  I didn’t realize how misshapen her head was until I saw some of the “before and after” scans at STAR.  It’s hard to imagine that, in just a few more weeks, Kennedy’s time in her helmet will be a distant memory.  I can’t wait!

follow this chickadee!

I woke up this morning to lots of wonderful comments from lots of new followers, and once the caffeine kicked in, I realized why!  Monkeybean is the featured blog this week on the Follow Me, Chickadee blog hop!  Follow Me, Chickadee is one of my favorite weekly hops, and I’m so excited to be their featured blog this week!  Thanks, ladies!

So…if you want to find some really great blogs – check out the Follow Me, Chickadee hop and link up!

Bean and I have a girl’s morning planned today while Bennet’s at preschool.  We have her 6-week follow-up for her STAR band – I can’t wait to get her scan and find out how much progress she’s made with her helmet!  Her head looks a lot rounder to me, so I’ll be happy to know exactly how much more round it’s gotten since we started working on fixing her cranial plagiocephaly!

Have a great morning, everyone!  Stay warm!

project 365: week 94

January 12, 2011: We finally got some snow! I’m feeling spoiled by the blizzards of last winter and am really feeling slighted by these 1-2 inch snowfalls we’re getting! Either way, Bennet had fun playing around in the snow, and local schools were closed, so we got to have lunch with my mom (who is a teacher) since she had the day off. All-in-all, a successful “snow day!”

January 13, 2011: Beanie had her 4-week follow up appointment at STAR for her helmet. Everything is going great, and at her next appointment we get a scan of her head to see where we are with her flat spot!

January 14, 2011: Things I love about this picture: #1 – Bennet’s coloring a “princess” coloring book, #2 – the sunlight that comes in our house from the French doors in the dining room, #3 – the view of my clean house in the background!

January 15, 2011: Celebrating the Steelers win! Go Steelers! We’re so excited to watch the game again this weekend with Bennet. Turns out he was an absolute blast to watch football with!

January 16, 2011: Check out my new curio cabinet! It’s perfect – matches our dining room set, displays my grandma’s china beautifully and, the best part of all is – it was FREE! I got it from someone on Freecycle and I am so excited to have it!

January 17, 2011: Bennet is obsessed with my grandma’s red pick-up truck. We met my mom and Mommom for lunch at the mall, and since we were parked in different lots, my mom drove him in “Mommom’s truck” over to my car. It was a short ride, but it made his day!

January 18, 2011: My poor little guy! Bennet started throwing up when I picked him up from preschool and we had quite the afternoon! Thankfully, after some Children’s Pepto and a good nap, the vomiting seemed to stop. We spent the rest of the evening snuggling on the couch, bucket close by. Have you ever seen such a sweet, sad, little face?

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Don’t forget – tonight is the last night to enter my BEARPAW Boots giveaway! Winner will be chosen tomorrow – so enter now for your chance to win!

cranial plagiocephaly: 1/4 of the way there.

Kennedy has been in her STARband for 3 weeks – which means we’ve got 1/4 of the time she’s likely to be wearing it behind us.  To me, having her in it for 9 more weeks seems light years away from now.  While I’m sure that, when all is said and done, we’ll be glad we treated her cranial plagiocephaly with the helmet and corrected her flat head, I definitely vary between feeling okay with everything and absolutely hating that she has to wear it. 

Kennedy, good natured as always, seems completely unfazed by the STARband, and acts like it’s not even there.  She sleeps through the night with it on, and she wears it for the prescribed 23-hours-a-day without batting an eye.  The first night she slept in it, I was sure she’d be awake all night, but that was definitely not the case.

Like all things involving babies, getting used to life with the helmet has been a learning process.  Our first big concern was that the helmet was squishing one of her eyes shut in the front, in the area where it was putting pressure on her skull.

It didn’t seem to bother her, but we worried that it would cause her eye to be permanently squinty like that, so I called Lisa, our orthotist at STAR, and was reassured by her that, if it wasn’t bothering Kennedy, it was fine.  Lisa invited us to come in to have some of the material inside of the helmet removed, to relieve the pressure on her eye, but since it wasn’t bothering her, we waited until her 2-week follow up and Lisa adjusted it then.

Another surprising part of the STARband has been the smell of the helmet.  With her little head sweating inside of it for 23-hours a day, the smell when we remove it in the evening is pretty gross.  I read on another mom’s blog once that the smell is like a thousand stinky bowling shoes, and I’d agree!  Because of the smell, we wash it most nights with baby shampoo to give it a fresh start for the next 23-hours of wear!

Last week, we had her two-week follow up appointment and were happy to learn that it does seem to be working!  Lisa explained to us that, if you feel jagged bumps on the baby’s skull, it means the skull plates are shifting and that the helmet is re-shaping the head the way it’s supposed to.  Kennedy’s head is definitely bumpy, so it’s good to know we’re fixing that flat spot!

Andrew and Bennet got to come with us to her two-week appointment, and Kennedy had a great time playing with the toys with her big brother while Lisa did some adjustments to her helmet.  We go back next week for her four-week follow up, and then at her six-week they’ll do another scan of her head to see what progress we’ve made.  I can’t wait until that appointment, both because we’ll be halfway to the end, and because it’ll be so exciting to see how her head shape has changed after all those weeks in her STARband!

As much as I tried to go into this process with an upbeat attitude, I’d be lying if I didn’t admit that there are sad days.  I am growing increasingly weary of getting pitying looks from people in public, or having people say, “What’s wrong with your baby?”  The majority of people just stare at her, hoping I’ll offer information about why she is wearing a helmet.  As much as I feel up to it, I try to explain the STARband and cranial plagiocephaly to every staring stranger, since the more people hear about such things, the less moms with babies who need helmets will get stared down in public.  I miss having her head free to kiss and snuggle without interference from the bulky plastic helmet – but I am often surprised by how we kiss and nuzzle the helmet just like we do the rest of her.  I had read on several blogs that other moms found themselves treating the helmet like it was just an extension of their baby, but I didn’t understand what they meant until now.  I often check myself and remember that she isn’t sick, and that we’re so blessed to have a flat head be the big worry we have for our children.  I do think, however, that a problem with your baby is unsettling – no matter the level of severity.  The proud mommy in me wants people in the store to stare at her because she’s beautiful and sweet, not because they’re trying to figure out why she has a helmet on.

While I can’t wait until the day we get to take the STARband off for good – I’m counting my blessings that it was covered by our insurance, as I know it’s not for most parents.  I’m thankful that we have the opportunity to correct her misshapen head, and that she will be even more beautiful with her perfectly round head in a few more weeks. 

I know that this, too, shall pass – and that this summer we’ll be watching her eat cake at her first birthday party, or swim in our pool, or chase Bennet around the yard – and her days in her STARband will be a distant memory!

cranial plagiocephaly: helmet-fitting.

Kennedy's STARband came in this week, and we had our appointment this morning to have her fitted with her helmet! I will admit, I felt a little pang of sadness when we checked in on her at bedtime last night, knowing that the big day was coming. It's easy to feel "okay" with it when it's not actually a reality! The same thoughts played in my head as I tried to fall asleep last night - Could we have worked harder with tummy time and repositioning and kept her from needing one? Am I a bad mom for letting her lay on her head so much that it got a flat spot? Is the STARband really going to work? Will people stare at her in public? The funny thing is, once she got the helmet and we were on our way home, I realized that it's really not that big of a deal at all. She has a helmet. So what? In 12 weeks, this will be a distant memory. I may not know the answers to all of the worrisome questions that plague me now and then, but I know that we've made the right decision for our daughter - that much I am sure of.

When we got to the appointment, our orthotist, Lisa, tried the helmet on Kennedy's head, and then went over some instructions with me. For the first few days, we increase her time wearing the helmet in increments (1 hour on/1 hour off, 2 hours on/1 hour off, 4 hours on/1 hour off, etc.) until day 5 when she will begin wearing the STARband for 23 hours a day. We can take it off for special occasions, important photos, bathtime, etc. - and we have to take it off if she gets sick and has a high fever. We have to clean it once a day, and we can expect it to smell bad, as she'll be sweating into it (yuck.) I was shocked by how completely oblivious she seemed to it being on her head. I'd read that that was the case, and heard it from friends who have been through this, but I definitely wouldn't have believed it without seeing it. After checking the fit of the helmet to see where it needed to be trimmed down, Lisa took the helmet to make some adjustments to it. While she was gone, Kennedy and I snuggled, and played, and sang silly songs to pass the time.

It took two times of putting the hemlet on, and making adjustments to the material inside of it before Lisa was happy with how it fit. From there, we practiced taking it on and off a few times and that was it! We were sent on our way and told to come back in two weeks for a follow up to check her progress. Easy, peasy.

We've been through two "1 hour on" time periods this afternoon and still, Kennedy remains unfazed by the helmet. I can't believe it doesn't bother her, but she doesn't seem to know it's even there!

I've already learned a few things since we brought it home:

#1 - It's easier to get it on and off if you put her in the Bumbo Seat so you have both your hands free.

#2 - Toddlers are jealous of special hats for their baby sibling.

Bennet keeps saying, "Nennet wear it? Nennet have hat? Nennet have helmet?" Lisa suggested that, if that happened, we could get Bennet a bike helmet to make him feel special, too. We may be headed to two babies in helmets around our house!

I have definite plans to "bling" Kennedy's band. Glitter and flower stickers have been purchased, and I can't wait to jazz it up and make it even more fabulous. For right now, we'll just take some time getting used to life with the helmet, and being thankful that we have the STARband and are taking care of our little Bean's flat head.

cranial plagiocephaly: the helmet has been ordered.

All second thoughts and worries about making the decision to have Kennedy fit with a STARband to treat her cranial plagiocephaly were quickly erased early this week when we received a letter from our insurance company saying that the STARband had been deemed medically necessary and would be covered under our insurance! We had planned to have Kennedy fit with the helmet regardless of the decision made by our insurance company, but hearing that we would not be responsible for the $3,500 cost out of pocket was quite a relief for us! I quickly set up an appointment to start the process of ordering Kennedy's STARband and took her in for her next scan.

At this appointment, our orthotist scanned Kennedy's head again to check to see how her head shape had changed since we first came in a month ago.

Her head had grown in every area except for the flat spot in the back of her head - no change whatsoever there! This only further confirmed to me that she needed the helmet!

We took some "before" photos of her head after her scan. I can't wait to compare these as her treatment progresses. Sometimes, I don't think her head looks that flat, but I'm sure once she wears the STARband and her head fills in where it's supposed to, the difference will be very obvious!

I was surprised to learn that we can expect her to be in the helmet for 12 weeks. Although the flatness may correct itself sooner, our orthotist explained that 12 weeks will give the plates in her skull time to strengthen. If we remove the helmet too soon, there's a chance that her head will go back to being flat - we definitely don't want that!

The helmet will be in next Thursday, and we'll go in then for her initial fitting. From there, we'll follow up with STAR every two weeks until she's cleared by our orthotist to ditch the helmet!

The good news, to me, is that we can take the helmet off for important photos - Santa, Christmas morning, her upcoming baby dedication. The STARband is supposed to be left on 23 hours a day - which means that if we need to remove it for something important, we can.

We ordered the helmet (in baby pink!) and headed to Hobby Lobby after her appointment to buy some glittery stickers to decorate it. I can't wait to glam it up! She's going to be the cutest helmet-baby ever!

There was a time that I dreaded the thought of Kennedy having to get a helmet. Now, I can't wait until next Thursday when we can get her fit with it and get her treatment started. The sooner we get the STARband on, the sooner Kennedy's cranial plagiocephaly will be gone and we'll be able to move forward! I know that, soon, this will all be a distant memory and the only reminder we'll have of Kennedy's days in her pink helmet will be her beautiful, perfectly round head!

cranial plagiocephaly: my baby needs a helmet.

At Kennedy's two-month checkup, our pediatrician showed some concern about the back, right side of her head being flat. She seemed to be favoring her right side more than her left, a sign of torticollis. Torticollis is basically a fancy word meaning that Kennedy's neck was twisted, causing her head to lean to one side of her body. I hadn't seen this problem before, but as soon as our pediatrician pointed it out, I couldn't stop noticing it. She slept with her head turned to the right, she favored the right when sitting in her swing or her car seat - and she was getting a nice, little flat spot on the back of her head as a result. I was cautioned about infant cranial plagiocephaly (flat head) and was sent home with some exercises to do with her, and told to give her more tummy time to try to keep her from favoring the flat part of her head. We planned to reassess her flat head and discuss cranial plagiocephaly treatment at her four-month checkup.

We worked hard at it, and we did the best we could, but we could see that she was still showing signs of torticollis, and that she still had a misshapen head in the back. A few weeks before her four-month checkup, I had her at the pediatrician for a possible ear infection and our doctor told me that she thought it was time for us to contact STAR Cranial Center of Excellence for an assessment of Kennedy's flat head. Although it was a hard call to make, I set up an appointment for her and took her in for an assessment. The clinician who did Kennedy's scan told me that she was 13mm "off" for head shape. She suggested that Kennedy be fitted for a STARband, the cranial remolding orthosis (helmet) that STAR produces. Choosing to have your baby fit for a helmet is difficult, and I was not sold. The clinician suggested that we try physical therapy for six weeks, and then come back for another assessment. I was hopeful, and made a physical therapy appointment for a few days later.

When I walked into the physical therapist's office, I was ready to take on the world. I thought that therapy would help Kennedy, and had visions of our cranial plagiocephaly nightmare ending once we got her torticollis under control and her head shape improving. The therapist examined her, however, and said there was nothing she could do to help. I learned that day that there are two scenarios with the kind of infant head malformation we were dealing with. Either the torticollis can cause the infant to favor the head, thus causing the flatness on the favored side, OR the flat head can cause the torticollis, since the baby naturally rolls onto the flat spot on their head. Kennedy's cranial plagiocephaly scenario was the latter, and since physical therapy could not cure her flat head, the therapist recommended getting her fit for the STARband.

To this physical therapist, I will always be eternally grateful. Andrew and I had battled with whether or not to go through with the process of a cranial remolding device. I wasn't sure if a small flat spot on the back of Kennedy's head would be a big deal when she was older and had hair to cover it. I didn't want to put her through having to wear a helmet 23 hours a day for 6 weeks or more just for a cosmetic problem that could end up to be hidden by her hair. The therapist explained to me that Kennedy's ears were uneven, and that if she ever had to wear glasses or wanted to wear sunglasses, they would be crooked on her face. She explained that Kennedy's sphenoid bone would be crooked and that she could have sinus problems later in life. She went on to explain that the sphenoid bone rests near the brain stem, and that its being crooked could cause balance problems or dizziness for Kennedy. When all of this was explained to me, a helmet seemed like a clear decision.

So now, we wait. We're in the stages of trying to get approval from our insurance for the STARband. Once we have an answer on whether we're paying for it out of pocket, or our insurance is covering it, we'll have her fitted for the helmet and start her treatment. Our pediatrician thinks that, because Kennedy is so young, she should only have to wear it for 4-6 weeks. I think we can handle that.

As worried as I was a week and a half ago about Kennedy having to wear a helmet, I am feeling at peace with our decision now. I found a great blog, Tattoos and Drool, where a mom chronicles her daughter's experience with the helmet. A post that she wrote addressed all of my fears and concerns, and made me feel so much better about the process. Thanks to this blog, I'm already planning cute ways to decorate Kennedy's helmet. And, thanks to a few friends who have recently gone through their babies having a cranial remolding device, I feel confident that we'll get through it, too and that, a year from now, it will all be a distant memory. I can only hope that my attempt to chronicle Kennedy's process with her STARband will help some other teary-eyed, worried Momma who is trying to navigate the confusing world of torticollis and cranial plagiocephaly.

Until we make more helmet progress, we're just loving our little Bean and waiting it out. She's so pretty and sweet, flat head or not! I love her so very much. It's a good feeling to know we're going to do what is best for her - and that she'll soon have a pretty, round head to show off!