STARband

We’ve talked with some of you recently and you’re up to speed with the latest Kaylee news.  For those of you that don't know, Kaylee has dealt with having torticollis since birth as a result of being breech. She started physical therapy several months ago to help with stretching her neck muscles and improving her head rotation. Great news – she’s been doing awesome! Rotation is good and there is still a little bit of a tilt, but we’re still working on it and notice it less and less all of the time.

We have however, been dealing with some flattening of her head-positional plagiocephaly - due to the torticollis and her wanting to put her head in the same position all of the time (especially while sleeping). Her increased mobility has certainly helped - sitting up, sleeping on her tummy, and working on learning to crawl are all going to help her head “round out”. After talking with her therapist we went to a neurosurgeon to get a second opinion. He diagnosed her plagio as moderate to severe, and recommended we look into the use of a cranial remolding helmet. Most of you won’t notice some of the symptoms of plagio (the flattening on one side, a rounding on the other, her ears are a little offset, and one cheek a little chubbier than the other) in the pictures you’ve seen of Kaylee or even when you're face to face with her. We can’t blame you, that smile is pretty captivating!

After talking with the people from Starband and using their cranial scanning machine, we were able to see specific areas of Kaylee’s head that were misshapen. We also were also able to see the calculations of the measurements taken and how those numbers compared to what is considered “normal”. It's crazy that we are only talking of differences of 6 mm…but Ron and I talked things over, weighed out different possibilities/consequences and decided we would go ahead with the helmet.

Kaylee was fitted for her helmet today. After the initial adjustment period, they are recommending she wear it for 23 hours per day for the next 3-4 months, but depending on how fast she grows, it could be less. In the grand scheme of life, this is pretty minor. We’re lucky that we don’t have anything more serious to worry about concerning her health. We share this not to make a big deal of this, but so you wouldn’t be taken by surprise the next time you see us or if you see pictures of Kaylee in her helmet. The blog has been our place to share our stories and photos, particularly for family we don't see as often as we'd like, so you'll probably be hearing some helmet stories over the next few months too.

She’ll still be the sweet, smiley girl who steals your heart, especially now that she has the waving-thing down.