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!