Thursday, March 24, 2011

How To Become Iron Man ~Part 1

First, start with back sleeping.  Then add a little bit of Torticollis.  Mix in an uterus abnormality. Finish with a premature birth.

Most infants spend a lot of time on their back.  The weird thing is—Joey loved sleeping on his tummy when he was a newborn.  Of course we only let him do it when we were right next to him, but he spent a lot of time on his tummy.  That leads us to the Torticollis, which means “twisted neck”.  The baby’s head is tilted to one side while the chin is turned to the other side.  Yep.  Joey has Congenital torticollis, which is most often due to a tightness in his muscle that connects his breastbone and collarbone to his skull.  From what I’ve read, the tightness might be caused by how he was positioned in my “uncooperative uterus” (an entirely different story for another time that involves an “incarcerated uterus” and Tommy’s birth story) or because his muscles were damaged during delivery.  He arrived via a C-section, so I’m guessing that it was my severely tipped uterus that caused the problem.

Joey was delivered at 37 weeks, which while not technically premature, was still early.  According to his plastics doctor, baby’s skull bones harden dramatically during those last few weeks.  When babies are born early, their heads are exposed to hard and flat surfaces before they are ready and are more prone to flattening. 
Iron Man wouldn’t be Iron Man without his helmet, would he?

That’s our next step!  As with every new diagnosis, I’ve been in denial about this one as well.  Each time something new pops up I think—“I can’t possibly deal with this.  This will never work.  This isn’t happening.”  Then slowly it sinks in and slowly we call the grandparents and tell them the latest and slowly it starts to become part of our normal.  For some reason, this one has been tough.  I don’t mind the helmet.  It’s short-lived and if it helps to round out Joey’s cute head and help his face to be symmetrical again then it’s totally worth it.  It was just finding out the diagnosis and thinking “How will they do his open heart surgery if he has to have a helmet on his head?”  Rational?  Not at all.  The helmet comes off and from what I’ve read will develop quite a lovely odor all its own. 

The Torticollis part has been tough.  It involves weird awkward stretches we have to do with Joey’s neck as many times a day as we can fit in (the OT/PT people recommend at every diaper change—at current count that’s about 12-14 times a day).  It involves pushing his cute little cheeks to the side and trying to hold down the opposite shoulder all while distracting him and singing him the ABC’s.  God bless this little guy because he always smiles when I sing and that is saying a lot because singing (on key) is not a talent I was blessed with. 

This is where the pity party sometimes starts in my mind: “How can I do all his stretches?  How can I get him to all his appointments?  How can I remember to order more thickener so he doesn’t aspirate?  How are we going to ever make it through his heart surgery?”  Couple those with the non-Joey issues running at warp speed through my mind at any given moment: “I’ve got to pay the bills tonight.  Is the laundry done? Are we out of milk?  Did I put my out-of-office message on at work?” and sometimes I start to get a little overwhelmed.

Then we go to the Children’s Hospital and see one of Joey’s many amazing therapists, nurses and doctors.  That’s when I start to feel ashamed for my silent pity parties because I see beautiful children who can’t walk and are in wheelchairs.  Children with NG tubes.  Children who have lost all of their hair from chemo.   Children who wake up and fight the good fight every day.  True super heroes.  I guess it’s really all about perspective.  I think we’ll take our Iron Man helmet and some extra stretches this week and be grateful.

The Iron Man Process

Trying to chew on this weird white sock they put over my head.

Scanning his head.

That was a lot of work!

Joey's beautiful head

 Picking up his helmet later today!


  1. I can't imagine how overwhelming this can be. You are in my prayers every day.

  2. Well, it doesn't seem to bother Joey, he is feeling his new super powers! I LOVE his outfit!!

  3. Joey is absolutely adorable! I had to laugh at singing the ABC's- that is the ONLY song that will calm Evan if he's upset or if I need him to cooperate while taking his meds. He especially prefers Daddy singing it- Daddy can't carry a tune worth anything. :)


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