my heart hurts. my little baby alex is going to have to wear a helmet. we've known it was a possibility ever since the torticollis diagnosis back in september. they've been monitoring his head for a condition called positional plagiocephaly, which in a nutshell means the back of his head has flattened from always lying in the same position. it's pretty common to get positional plagiocephaly when you're diagnosed with tort. they sort of go hand in hand.
the good news is we are getting this early. alex's head is still very easy to reshape. that's where the helmet comes in—and the bad news. he will have to wear it (and this is the part that hurts my heart) for 23 hours a day for about five months. that's just as long as we've known him. i get teary-eyed just thinking about it. i know it's the best thing to do as far as treatment goes, and i know he won't remember it at all, but i can't help but think about how i won't get to see the whole of his face. or how i won't get to stroke his sweet, little blond wisps of hair. or the early morning snuggle time we love so much—how will it change? i also wonder logistical things, like how do you get his clothes off and on? he's a drooler right now and has to change outfits a few times each day. we start spoon feeding this weekend—how do i keep the food from getting under the helmet? anyone with experience here, please speak up!!
we are determined to make this scary time as much fun for alex as possible. tripper has suggested we have a helmet day in honor of alex where everyone can come wearing a different type of hat or helmet—football, hockey, batting, bicycle—you get the idea—to show their support. i think that's terrific! we can take lots of pictures and show them to alex later.
we also get to choose from a few "fun" patterns for his helmet. which do you like best? the plain white one you airbrush after the fact.
the doctor who took measurements on alex today, dr. ed, said alex's case is on the high end of moderate, low end of severe. to look at him in the face you can barely tell. all of his asymmetry is in the posterior quadrants of his head. here's a scan so you can see ...
every two weeks for the next five months we'll be going back to dr. ed to do what we did today. they'll compare measurements from the prior session to make sure we are making progress. he believes alex will respond very well with the helmet. we believe it, too. and march will be here before you know it, right?!
Permalink
| Leave a comment »
