Thursday, October 25, 2012


Something new...

So since Aspen was born she has held her head to the right.

Look at her coming home from the hospital: head deeply tilted to the right. the right.

Yet again...

Even snuggling in bed with brother and she's slightly tilted to the right.
 It got to the point where I began to mention it to Anthony quite often because I was worried it might be torticollis, where the muscles are tight on one side. He had noticed it too and we started blocking her in the car seat, swing, and bouncy seat so she couldn't turn so far that direction. He even did a few stretches on her to see what he thought might be going on. He concluded that he didn't think it was torticollis because she wasn't "stuck" and would turn her head both ways when asleep or while playing. So we didn't think much more about it. I just happened to mention it at her 6 month check up with Dr. Todd. I had been noticing lately that one side of her face was flatter than the other. Not flat, but maybe less chipmunk cheeks on one side. Dr. Todd looked at her head from above and put his fingers behind her ears and said yes, she was out of alignment and that it was time to see a specialist.

So off to Charlotte we went, Tuesday, October 23, 2012. Cranial Technologies is the name of the center where we were referred. Anthony took off work early to make it to her 4:15 appointment with me. I figured we both needed to be there. Your baby's head shape and her future appearance are pretty big decisions to make by yourself. We met a sweet consultant named Ashley who welcomed us and explained the procedure to us. She also loved Aspen's headband! She happens to be preggo with a baby girl, so future customer! :) Anyway, she told us what would be happening today and took us to the imaging room.

This was a very large room with a huge piece of equipment right in the center. We had Aspen stripped down to just a diaper and Ashley put this "baby bank robber" hat on her so the full shape of her head could be seen without any hair getting in the way. It looked sooo funny!

She didn't seem to mind at all. Anthony was instructed to hold her arms straight down by her side and then Ashley stood by on of the many cameras that were surrounding Aspen and tried to get her attention. 

Basically it's a big circuit of cameras. There were at least 4 surrounding her body, from all sides and angles. Then there was one directly above her head to look straight down on her skull. It was pretty quick and painless and Aspen didn't fuss at all. We were ushered back to our exam room to wait for the images to process and Aspen played with her first "big girl" toy!

So cute!

Our official consultant came to speak with us once the photos were processed and in the computer. She came in to talk to us and evaluate. She watched Aspen play in the floor with her toys and asked us to explain what was going on. According to our eval paper work she assumes this occurred in utero so it's not something we did, or didn't do. She took us to yet another room to view the photos with her. Those cameras took pictures that were then assembled into the baddest, awesomest 3-D image of Aspen we've ever seen. (Forget that it's the only 3-D pic of her we've ever seen!) It was a giant rotating, totally manipulative photo of Aspen's whole body. She could twist, turn, tilt, zoom in any way she needed to see the exact shape of Aspen's head to explain to us what we were looking at and how the skull was affected. We were officially diagnosed with plagiocephaly

She called her case "moderate" and said it was unlikely to get any worse. However, her ears are misaligned and as her head continues to grow it could lead to misalignment of her jaw. Other problems could also occur if not treated. I don't want us to do nothing about it, then when she's 12 she's mad at us because she can't put her hair in a ponytail because the kids laugh that her ears aren't matched up. And of course you have that sudden feeling of, what did I do wrong? But I know she wasn't just left lying around in her crib, swing, stroller, car seat, etc long enough to cause flat places on her head. It just happened. Stuff happens. No telling what really goes on in the womb. And really, you know they're all squished up in there. Poor baby.

So what does this all mean? what? Well, now we get a 'helmet.' Or more correctly, a band. This band will be made from super light weight material specifically for Aspen using the images they will take next week. It fits on her head and looks like a helmet. You've probably seen other babies out and about with theirs on. Maybe you just didn't know what it was for. So this band must be worn 23 hours a day for 10-12 weeks. Next week we go back for more imaging for the creation of the band. Then two weeks after that we go back for our first fitting and actually receive the band. And yes, you did the math right. That means we'll be wearing this helmet through all the holidays this year. If we get it mid-November, we'll probably have it until February some time. 

How do we, I, feel about this? I think it's the right thing to do. It's the right decision. I want her to be perfect in every way. I want her to have everything she wants in life. I want to eliminate any reason other kids could be mean to her later. I want her to be as beautiful on the outside as she already is on the inside. Does that mean I don't have reservations? Absolutely not. Does that mean I'm not worried? No way. I'm most concerned about the people who I know will  ask about it. I know they are just uninformed. But I know some will be rude and assume she has a disability, or that there's something wrong with her. And I just don't want her to be seen as anything less than perfect. Because she is...with or without the helmet. I just know how people are. They're curious. It's human nature. But it's also human nature to hurt people's feelings without expressly meaning to. I know there will be tears shed the first time I see her in the band. I know I'll cry as we get adjusted to this new "thing" in our life. I know there will be people who aggravate and anger me. I just hope I have the fortitude to withstand the gawking, staring, and rude comments people make. 

I'm very thankful for my friend, Nicole, who also went through this with sweet Mady. Without having a close friend to consult with, cry with, and lean on I'm not sure how this would've gone. I had no idea what the bands were for before I met Nicole and Mady when Lincoln and Mady were only about 4 months old. Thanks to her I now have a personal reference for all things related to plagiocephaly. 

I will definitely be posting pictures of our beautiful baby girl in her super cute helmet. Because they truly are super cute. The office showed us pictures of babies with their bands decorated for every season, with their names on them, some even come in funky patterns like sports teams and Hello Kitty. Interesting. Just keep us in your prayers as we undergo what I feel like is just 'one more thing' on our plate...that seems to be heaped pretty full these days. 


Anonymous said...

Keeping you all in my prayers! Jan B.

Lynette Ryhal said...

You know we are all here to support you!

Andrew and Anna said...

She will be just fine! Keep your chin up, dear friend <3

amy reep said...

So sorry you are going through this, but I know she will be great. She already is-just like Lincoln. So glad that you were on top of things.

Mama Belinda said...

Bless you Sweet Kyla guys have already been through so much . But you are strong and you have God leading the way ! So who cares what others say or think are loving parents doing whatever you have to for your child you