January 7, 2011

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.

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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.

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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!

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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.

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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!

7 comments:

April E. :) said...

She sure knows how to rock that helmet...and oh ma goodness...look at those chunky thighs...I can't wait to squeeze them when I sees her! :P

WeeMasonMan's Mom said...

So you guys are starting out with a set time frame and not "we'll see how things go?" I didn't even know that was an option!

When you get a chance, can you shoot me your e-mail address so I can stop blowing up your twitter feed? LOL

omgababy at gmail

Melissa said...

Good Luck with eveything. Our little Sophia had her starband on over the summer, which was tough with the hot weather. She handled it like a trooper. She also ended up only having it on for 6 weeks! Half the time expected. Our orthotist said he could tell we had her in it for the specified 23 hours so, good job! And we, too, would get stares and comments while we were out, but I just explained what it was and people seemed really nice about it. I also explained when people didn't asked, but I heard them talking about it. It'll get easier. Sophia had the pink starband also, and I decorated it with vinly stickers that I was able to change regularly. It made it fun to be able to change it all the time. Again, good luck with everything. It'll be over before you know it!

Amberpie said...

Hi, I'm glad I found your blog in my google search! My 5 mo old daughter just started wearing her STARBand on Thursday and its just been awful for me and her. She's ok when held upright but when laying down on her back her side (like when breastfeeding or napping) she just screams and scratches at her face and the helmet. When I take it off she has deep red marks where the helmet has been rubbing/putting pressure on her head. I'm one day away saying forget it! Did you find any of this going on in the first few days, and did it get better??

Terri said...

Amber - I'm glad you found me, too! I started blogging about our journey with the STARband because I couldn't find anything out there about it! I wanted to e-mail you and answer your questions, but I can't find an e-mail address on your profile. Please feel free to e-mail me at petersterrimarie@yahoo.com - I'll also leave a comment on your blog with my e-mail in case you don't see this.

To answer your question- NO, I don't think that is normal. You should call your orthotist and check in with him/her. Kennedy did have some red areas in the beginning, but never "deep" red and never once did she act like the helmet even bothered her. Occasionally in the beginning, we'd have to put some hydrocortisone cream on some of the red spots, but that was more because I was freaking out, not because it bothered her.

Your orthotist may need to carve out some more room in there - maybe it's too tight for her.

Hang in there, and don't say "forget it." It gets easier and they really do work - I see a big difference in Kennedy's head.

PLEASE PLEASE PLEASE feel free to e-mail me if you have any questions, or you just want to connect with another mom going through it. I'd also recommend checking out the mom who commented above (WeeMasonMan's Mom) and looking at her blog - her little man just got one this week.

Good luck!

Haseena said...

My 5 month old just got her helmet yesterday and it has been tough. I am so glad to have found your blog, it makes me feel like I am not alone. Today we have been putting on the helmet for 1 hour and off for 1 hour, and she seems to hate it when she is wearing the helmet. It breaks my heart to see that she is not her happy self, she is okay when she is being held upright, but the second I put her down she screams, and I have noticed that after taking the helmet off after an hour there are a noticeably long red spot on both sides of her face close to her ears (sideburns as the orthotist called it) and I am not sure if that is normal or not. I can't even tell if that's what is bothering her because she seems to be okay when held upright. I can't even imagine what we have to go through when she has to sleep in it. Any advice would be much appreciated.

Courtney said...

I'm glad that some of your children didn't have to wear their helmet for very long. Mine on the other hand has had his since December 11, 2010. Our orthotist said that his progress is slow and steady but estimates that he will likely have it on till December 2011. My son's head was a little severe and this has been such a hard road for us, especially since we were thinking that it would be 3-6 months and now we are in the middle of our 5th month. Good luck to everyone out there!

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