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Showing posts with label brachycephaly. Show all posts
Showing posts with label brachycephaly. Show all posts

Wednesday, February 1, 2012

Helmet Graduation!

Jackson's helmet and head mold now serve as a "unique" (and expensive) accent on his dresser.
After 5 months, Jackson is finally done with his helmet! I am so, so happy!! And so is Jackson! In the last couple of weeks, he seemed to be getting pretty sick of it and even figured out how to unvelcro the strap (he probably would have figured out how to take it off before too long). Best of all, his measurements all ended up in the normal range! Woo hoo!! Here's a before and after look at his noggin'.
BEFORE:
AFTER:
I guess it's kind of hard to see the difference with all of Jackson's hair, but this printout from the orthotist clearly shows the progress Jackson made. The inner (somewhat lopsided) circle is what his head looked like before the helmet and the outer circle is what it looks like today.
 
Isn't that amazing?! The whole process was easier than I imagined at the beginning, mostly because Jackson adjusted to it so well. That being said, I am still over the moon that we can put this "stage" behind us. No more daily helmet washing and no more fear of getting a black eye or tooth knocked out from a blast to the face with it. I am also looking forward to kissing that sweet little head whenever I want (and without it smelling like a dirty sock). I'm also relieved that we won't be met with stares and sad faces and from strangers wherever we go. Although, it was somewhat amusing to hear what people assumed the helmet was for:
  • "Oh, did he crack his skull?"
  • "Did he have brain surgery?"
  • "Did you guys ride your bike here?" (ummm... no it's the middle of winter...)
  • "Does he have epilepsy?"
After several questions like these I began to understand why people would look at Jax and I with such pity. I also became increasingly thankful that the helmet was not for any of those reasons- it definitely put things in perspective. Some of my favorite comments were from kids. Many of them were curious and would ask me (or their parents) why "that baby" was wearing a helmet. Even more of them were jealous and would say things like-"look at his cool helmet!" or "I want a helmet like that!" While cruising around Uptown one evening, a young woman approached us and told us how she had to wear a helmet when she was a baby and proceeded to show us how round her head is now. (Although, she said her dad still calls her "block head"). She said that he'd thank us one day. I also appreciated all the mothers and grandmas that would stop me and tell the stories of their kids or grandkids that had to wear helmets. They would all reassure me that we made the right choice and that it made a huge difference for their loved one... You've got to love the camaraderie of mothers! Especially when articles like these were coming out in the midst of everything. All in all, I am definitely happy that we decided to put him in a helmet and am very pleased with the results! Bring on the cute winter hats!!

Monday, July 25, 2011

Everybody Has Their Something

I wouldn't say it has been completely smooth sailing since Jackson's birth, but we have been extremely lucky!  Jackson is a very mellow little guy who has been sleeping through the night since he was about 2 months old and he has been extremely healthy (minus our little scare in the week leading up to his birth and his first day of life).  In my mama classes they always say, "everybody has their something."  Meaning no baby is perfect- silly me in thinking that Jackson was the exception.

It all started at Jackson's 4-month well visit.  Jackson had developed a flat spot on the back left side of his head.  I read that this has become more common since the advent of back sleeping and that it typically goes away once the baby is able to roll over and sit up, so I wasn't too worried.  However, I started to incorporate different activities throughout the day to help, such as rotating his sleep position and increasing his tummy time, but the flatness seemed to be getting worse.

I asked the doctor if his head shape seemed out of the ordinary and she checked it out.  The first question she asked me was if he always tilted his head to his left.  He had seen a different doctor at his 2-month well visit and she asked the same thing, but then said nevermind...  That question had been nagging at me since, but I just figured I was worrying over nothing (as I tend to do).  As soon as I heard that question again, I knew something was up.  I told her that I guess he did have a tendency to tilt his head that way.  (Of course, I started blaming myself immediately for not bringing him in sooner).  She thought the head tilt could be related to the flatness and she referred us to a physical therapist for further evaluation.

When I got home I looked at the hundreds of pictures I've taken of Jackson and saw, very clearly, that he definitely tends to tilt his head...  I guess I just thought it was a cute little quirk of his.  I mean, come on, who would think there was anything wrong with this adorable little face:

Last Thursday we had our first appointment.  Jackson's therapist evaluated him from all different angles and positions and she measured his head with a caliper-like devise.  She said he has torticollis and plagiocephaly.  In regular language this means that the muscles in the left side of his neck are shorter than on the right side of his neck.  (Which she thought was most likely caused by how he was positioned in the womb).  This makes it difficult for him to turn his head to the right, especially when he sleeps.  Torticollis often leads to plagiocephaly (which is the flattening of the back/side of one's head).  Since infant's skulls are soft and moldable, if they are in the same position for too long (like on their back sleeping) their skull can re-shape.

Next, the physical therapist took Jackson through a series of strengthening exercises.  I could tell he wasn't super thrilled with all she was having him do, but he held it together....  at least for a little while longer.  The stretching exercises were done last (and now I know why).  He immediately started crying screaming.  She assured me that the stretches don't hurt, but that babies just aren't used to how it feels.  Hmmmm....  I wasn't buying it.  Watching him go through that was even worse than watching him get his shots.  Then, I was told that I would have to do this 2-3 times 3-4 times a day at home!  Now I was about to cry.

Finally, I got the worst news of the day.  Jackson would most likely need a helmet in order to correct his head shape.  Since this wasn't discovered earlier, even once the torticollis is resolved, his head probably won't reshape itself.  It's mostly a cosmetic thing, but in some cases the ears may become misaligned, which can lead to vision, balance, and TMJ issues later in life.  Now it took everything I had not to cry, especially when she informed me that these helmets must be worn 23 hours a day and that he'd probably have to wear one for several months!  I realize there are much worse things that can happen, but it was really hard to hear.

I fought back tears all the way home and kept telling myself that everything would be fine.  A few hours later, I had worked up the courage to try the stretches.  He immediately started screaming and I was only able to hold the stretch for 7 seconds (I'm supposed to hold it for 30).  At this point, I had completely lost it.  There is nothing worse than having to do something that causes your child pain.  Plus, I was feeling extremely guilty about not catching it sooner or asking more questions at his 2-month appointment.  I also couldn't help but wonder if doing more tummy time would have helped.

Over the past few days the stretches have gotten less painful (for both of us).  He does much better when I distract him with my beautiful singing voice (if there was a sarcasm font I would have used it there).  I have also gotten less freaked out by the whole helmet idea, especially after chatting with another mom whose son also had to wear a helmet.  Thank you Melissa!  She even pointed out how helpful it was to have a helmet during the rolling over, sitting up, and learning to crawl phase.  (If Jackson is anything like John and I, a little extra head protection will be a very good thing).

We have an appointment with an orthotist next week, who will fit Jackson for the helmet (and make sure that he's even a candidate).  We are also scheduled to meet with the physical therapist every other week, through September, to help correct his torticollis.  She'll give us different stretches to do at home as he gets stronger.

Despite all of this, Jackson is just as happy as ever and has even started laughing (it's the best sound in the world)!!!  He's only done it three times so far, even though John and I have tried EVERYTHING to get him to laugh.  Apparently, he doesn't find us all that amusing.  We have yet to capture his elusive laugh on video, so this picture will have to do...