The Unexpected Journey Begins

This a post (or rather a start to a series of posts), that I don’t know exactly how to begin. There is no clever, or cute way to revisit this journey — the journey we went through last year. My blog has traditionally been very personal, but never this personal.  Yet, I feel an intense need to share our story.  I want to share it for my daughter, so I’ll remember the important details that fade over time.  I want to share it to help others who may be facing the same challenges — the same journey.  I need to share, to share to as a way of healing.

Last year our daughter, at about 8 months old was diagnosed with Lambdoid Craniosynostosis.  I’m going to share our journey — right from the very start.

Baby Taryn at shortly before her diagnosis.

Baby Taryn shortly before her diagnosis.

When Taryn was born, our family felt complete. Two gorgeous healthy boys, and finally our baby girl to round out the team. Everyone was elated. Moments after I delivered Taryn there was a particular moment that seemed so inconsequential at the the time, but in the future, it would haunt me. I remember being filled with emotion as the umbilical cord was clipped and after holding my baby girl for a short time, the nurses moved her over to the left of my bed and proceeded to “check her out.”  My doctor assisted, whispering reassuring statements as they went through the usual review. “Everything is looking wonderful.” It may sound strange, but I remember holding my breath during this particular moment with each and every one of my children.  Inside I was saying a silent prayer for a healthy child. Taryn was indeed healthy. And we were indeed grateful.

As my doctor finished up the examination, she cooed at how nice and round Taryn’s head was shaped.  And then those quick little words, “Oh, it’s a little mis-shapen in the back here, but it’s okay.  It will round itself back out,” and like that we were on with our recovery.  It seems strange to me that I remember that moment so well.  At the time, I truly thought her head would round back out.  It wasn’t drastically mis-shapen.  After all, the doctor almost didn’t even notice anything was off.  But as Taryn got older, and her head shape didn’t round back out, I started to worry as I replayed that moment in my mind.

I asked our Pediatrician (a new one as my delivery doctor moved on teaching other doctors) about her head shape at 3 months.  He wasn’t concerned about the shape at that time…. And then I inquired more directly at 6 months. By now, Taryn’s head shape definitely looked different from the back. It was sloped in one direction. From the front she looked “normal.”  I wasn’t overly worried, but I was starting to wonder if she would need a helmet.  Our doctor agreed that we should have it checked out by a Craniofacial Specialist, telling me he wanted to make sure one of Taryn’s “sutures in her skull hadn’t close prematurely.”  These words flew past me so quickly at the time that I didn’t even think twice about them.  He was more concerned with plagiocelphaly (a big word for when the skull is mis-shapen due to positioning; i.e. sleeping on one side more than another). I had been careful to make sure Taryn wasn’t sleeping on one side over another since I had been watching her head shape change.  But, I’m certainly no doctor. I figured I’d leave it up to the experts and we made an appointment at a Children’s facility in Tacoma.

Originally, I made the appointment in June and she was scheduled out until November to be seen. Obviously, the more I thought about this, the more I decided we couldn’t let that much time pass (in case something was indeed wrong).  Finally, my persistent motherly calls paid off and the appointment was moved up to the end of July.

On the day of the appointment I remember dressing Taryn in a cute tank top that my mom bought for her.  It was blue and read (Pretty like Mommy). That’s not really the kind of thing that you purchase for your own daughter…. but since my mom purchased it, and it was adorable with ruffled tank sleeves, I decided that day would be a good day to wear it.  We were going to the specialist, but I wasn’t worried.  People asked me if my husband was going to come along. To be honest, the question shocked me a bit. In my mind, it was going to be a simple visit.  Just another doctor appointment. I had prepared myself for the news that she might need a helmet, thinking that particular piece of news would be the most difficult to swallow.  I was ready for it though, and knew if a helmet was needed, it would be temporary, and that she would have the cutest helmet in the world.

Boy, was my prediction of the appointment off. Way off.

[more to come in my next post]

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