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Helmet FAQs

August 17, 2010

I realized I never really explained why LPK needs a helmet– maybe if my blogging were more consistent I would remember to fill in these little details 🙂

The story goes like this (as best as I can make it out).  LPK dropped really early in my pregnancy.  He was head down and buried way in my pelvis by 24 weeks.  I had an ultrasound about once a month for the remainder of my pregnancy and I can tell you that he did not budge from that spot for thirteen weeks (aka when he was born).  It was no surprsie then, that he ended up with torticollis.  It could be unrelated, but I’m blaming my uterus.  Anyway,  one neck muscle (right side) is shorter and tighter than the other.  He has always had a head tilt, he would not turn his head to nurse from my left side after he was born– it took weeks to get him to do that, he wasn’t able to lift his head on his own until five months, and it gave him positional pagiocephaly.

At LPK’s one-month appointment, the doctor noticed the head shape and told us to just try and make him look to the right as much as possible.  His pediatrician never said much about it after that.  The neurologist saw it on the MRI, however, and was much more concerned with the shape of his head than the brain cyst (which was fine by me).  He said the head shape was past the point it would self-correct– something had to be done promptly.  (He actually labeled LPK as “severe”, but the orthotist said it was only “moderately severe”)

We do daily stretches to work out (and hopefully lengthen) his neck muscle.  And now that he is sitting and tummy surfing, he is increasing his range of motion.  All in all, his torticollis isn’t that horrible anymore.  He still has a slight head tilt, but it is so much better than before.

The helmet will be worn for up to seven months.  It’s job is to straighten out his head.  It constricts the areas that are bulging and leave room for the flattened areas to grow into.  I’m so proud of how well he is tolerating it, but I do miss seeing his fuzzy little head every day.  And nursing is– well, we have to adapt.

Wearing the helmet at night hasn’t worsened his sleeping habits.  On a cynical day (with a raging headache and no sleep to back me up) it’s hard to believe they can be worsened, but actually, I think his sleeping is getting better.  It’s a routine, at least.  I put him down at bedtime.  He wakes up an hour later and I feed him again, put him down and go to bed myself.  The next time he gets up (I stopped looking at the clock because it’s too depressing), I take him to bed with me and then he nurses on and off throughout the night.  I don’t sleep very well with him next to me (especially when he keeps hitting my nose with his helmet), but it’s better than getting up and down repeatedly.

I’m cautiously optimistic about my milk supply.  I haven’t had to supplement with formula for the past three work days, hooray!

PS  If you are wondering why you never saw LPK’s funny head in photos–  yeah, I purposely take them all at a flattering angle.

2 Comments leave one →
  1. August 18, 2010 7:50 pm

    Awe! You guys are definitely troopers, handling a medical difficulty like this so matter-of-factly! I can only imagine the difficulties of nursing, or sleeping, with a helmet on 😛 I did wonder, though – just as a matter of practicalities – where do you position LPK when he’s sleeping? I only ask because I couldn’t figure out how he’d hit you in the face with the helmet, because when I cosleep with my daughter, I put my arm in an upside down “L” down above and beside her, so she sort of sleeps in my armpit. You might find that more comfortable (although then again, you might not – it took a few months for me to learn to sleep comfortably in that position), and it would probably be less uncomfortable getting bonked with a helmet in the body than in the face. If you do decide to try that, just make sure you tuck the covers down so that his shoulders and head can be free, of course!

    Glad to hear that your milk supply may be improving again! Breastfeeding, and sleeping, are such tricky issues. You’ll continue to be in my prayers – the sleep thing is just so tough. My best advice is just to keep doing whatever gets you the most sleep, and then reassess and readjust periodically, and it will (it has to) get better. He won’t be 18, or 10, or probably even 3, and still not sleeping through. That being said, the thing that scares me the most about having another baby down the road is starting all over on the sleep journey!

    • August 24, 2010 8:30 am

      I sleep the same way (L shape), but what happens is that LPK wakes up and gets right up on his hands and knees and starts rocking and crying. And then inevitably bashes my nose as I fumble for him in the dark. It’s worth it though– I forgot how much I loved sleeping with him curled up beside me. Even my husband is loving it.

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