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Torticollis is not a name of a turtle

Bekah had torticollis as an infant, which is a twisted neck in which the head is tipped to one side, while the chin is turned to the other.

Bekah had torticollis as an infant. Torticollis is a twisted neck in which the head is tipped to one side, while the chin is turned to the other.

When we left Akron Children’s NICU with Rebekah on Jan. 21, 2012, Christopher and I knew that open heart surgery was looming in the near future.

We also knew of, but definitely weren’t nearly as worried about, a little bit of torticollis she had going on. We knew surgery would be within a month or two, and so conferred with Bekah’s pediatrician and decided to wait until after surgery and then start physical therapy as soon as her little chest was healed enough to begin.

What we didn’t know was that Bekah apparently LOVED her torticollis, and that now, over a year later, heart surgery seems like it was a much easier solution to a problem than over a year of pediatric physical therapy for a crooked neck.

When she first started going everyone pretty much agreed that it should only take a few months to make her neck strong enough to support her head better, and to stretch her muscles so that it didn’t look like her left ear was connected to her shoulder.

After a few months, when Bekah didn’t seem to be progressing as quickly as expected, we went to see Dr. Adamczyk to see if there was something wrong with Bekah’s neck or spine orthopedically that would not let her head get straighter. He checked her and did not find anything of concern.

Our next visit was to Dr. Lawhon to see if there was an ophthalmological problem and she was tipping her head in order to see better. There was not.

We decided that Bekah was just very stubborn.

Swinging-with-her-head-stra

Actually, though, I really think that Bekah just loved going to therapy every week.  Most Thursdays she is waiting at the door with her arms full of toys and other things that she wants to share with Jeanette, her therapist (who is also her pediatrician’s sister…sometimes I think Bekah just wants to be a member of their family).

From the very first visit, even when she was only a few months old, Bekah has worked for an hour without putting up much of a fight, and recently she has been trying to stay even longer just to play with Jeanette and her bin of toys.

I knew that even though she wasn’t progressing as quickly as everyone had planned, she was getting better, so I wasn’t totally shocked last Thursday when Jeanette asked if I thought it should be Bekah’s last visit.

sitting-with-her-head-strai

I can tell you from our NICU experience that I always think I’m ready for something to end until it’s actually time to go.

I’m pretty sure I cried all of Bekah’s last three days in the NICU hoping that she would gain weight (as were Dr. Feick’s requirements to go home), and yet hoping that we could stay in the nice, safe place we were used to, the only place Bekah had ever known as a home.

I must admit that I thought Jeanette was joking at first, and then I started sweating a little when I realized she wasn’t.

So, even though Bekah was probably really ready to be done with therapy last week, we’ll be going back in a month for one last, just-to-make-sure, visit.  I think this time I’ll be ready.

Read the rest of the Plant family’s story through her blog, Following Your Heart.

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About Sarah Plant, Patient Family

Sarah Plant and her husband, Christopher, live in Mineral Ridge, Ohio, with their daughter, Bekah, and a rabbit named Gussie. She enjoys bike riding and spending time with friends, family and her fellow church members. Sarah is a stay-at-home mom and former high school English teacher. In her "Following Your Heart" blog, Sarah shares her experiences as a first-time mom whose baby was born with a congenital heart defect as well as a mom of a healthy boy.

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