Friday, April 20, 2012

The One with Emmy's Head

I wanted to write out the story of my sweet baby's head. About all the the things she has gone through and  will go through.
The truth of the matter is we are truly blessed to have 2 amazing, sweet, healthy children. We were thrilled that both babies were over 5lbs and didn't have to be admitted into the NICU or anything!  My poor Emily has had her fair share of turbulence along the way though. Here goes...

From the beginning, (I mean, a week old) we noticed that Emily always looked to her right. I thought this was no big deal, but she was very consistent about it. I would lay her down with her head facing left, and within a minute she would turn it back.
                                              (Emily, left)



We brought this up at her 1 month appointment, and then her 2 month appointment at the pediatrician. She said it was normal and that some babies just "favor" a certain side. When she was about 3 months old, I noticed slight asymmetry in her face (one eye appeared bigger, one cheek seemed fuller, her ears were uneven). I called the doctor and she recommended physical therapy right away.
                                                                                    (Emily, right)
Within 5 minutes of being at physical therapy, the therapist said she needed a cranial band. Her head had a flat spot on her back right side, causing her to turn that way constantly. The bones were shifting in her face, causing one eye and ear to move backward. She was diagnosed with moderate plagiocephaly (flat spot) and severe torticollis (tight muscles in neck that cause head turning and tilt)
(diagram of plagiocephaly by Huang MHS)
So we were off to Cranial Technologies to get measured for a helmet. This place is about an hour trek from our house in Fort Worth to Dallas. They put a stocking on her head to smooth out any flyaway hairs in order to take a super cool 3-D image of her head. Emily was not a fan.



That's ok though. The process at Cranial Technologies is MUCH better than other cranial band places. At other companies they literally make a physical plaster mold over your baby's head, which I'm sure is a terrifying and awful experience for a baby. I love that they were able to digitally make a mold of her head! After 1 week, her helmet was ready!
I painted it pink and added some cute bird and owl stickers so that it would seem less scary and medical looking to others. I think she looked adorable in it! At first, she was very sweaty and got rashes, but she got used to it. She wore it 23 hours a day.  Each week, I took the girls out to Dallas to get her helmet adjusted. We could see results right away. She was able to move her head more freely once it became rounded in the back. After 6 weeks, she was finished with the process! Hooray!
                                                                (Emily's first certificate!)

It was a difficult choice for our family to get her cranial band with this company. The reason we chose Cranial Technologies is that they use the digital imaging (rather than a plaster mold) and their cranial bands weighed only 5oz compared to 15oz at other places. Poor little Emily could barely hold up her head as it was, let alone with an extra pound on it! At other companies, the band is covered under our insurance. This place was not covered, so we would have to pay $3,000 out of pocket. We decided to fork over the money for the better helmet, even if it meant driving 2 hours each week. Her little noggin is worth it! :)

Emmy still goes to physical therapy weekly in order to gain full range of motion in her neck. She still has a head tilt:

In order for her to be able to crawl/walk correctly, she needs to have a balanced perspective, not tilted. So now we are on our latest apparatus, the "tot collar". I didn't name it. I actually hate the name. Its basically a brace made of tubing that holds her head correctly.  I'm terrified of it because all over the information booklet there are warnings that she could get the collar stuck on something and hang herself.  It's awful.  But I know it helps. Luckily she doesn't have to wear it 23 hours a day. She can't sleep, eat, ride in the car, or bathe in it, so that limits our time substantially. Less time to be paranoid.
                                                                    (my schnazzy neck brace)

I'm not sure how long this process will be with my sweet baby, but I know she will do therapy until she is about 12-18 months old. I'm glad she has such a sweet demeanor. All of this is minor in the grand scheme of things, and I'm thankful that they are both adorable, healthy girls.

9 comments:

  1. Aww. Sweet Em. The neck thing looks like it's helping, though! Imagine having a permanent pillow...that would be sweet! Mainly, I'm commenting because you seem to always respond to comments, and I'm feeling needy. Any chance you and the girls might want to see an Aunt Vicky on Wednesday?!? It's almost Aunt V's Birthday, which means part-ay time!

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  2. That's so hard! I know lots of babies who have this, mostly due to people being so scared to put babies on their tummies that they are always lying flat on something. (Sounds like Em's reason was not because of that.) I know it's hard with twins in general and then to have to do the physical therapy stuff! Crazy! But I think you guys made great decisions and all the kids I know that did it when they were younger have recovered and it doesn't affect them still. Hope that for you guys, too!

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    1. Yeah, she was like this from day one. Typically it happens with twin A (lower twin) because they are squished in-utero. Thanks for the encouragement! :)

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  3. My daughter also turned her head to one side right after she was born. We noticed head flattening around 2 month and she began therapy at around 3 or four months till she was around 1. She never required a helmet, but the therapy worked (especially home therapy done by us) and she has full range of movement and no more head tilt. It kind of freaked me out at first until I saw all the kids in therapy who had much more severe and permanent disorders.

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  4. I'm glad things worked out for you! :)
    It's true, there could be a lot worse. We are blessed.

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  5. We chose Cranial Tech for the same reasons and loved it every step of the way (even the hour drive each way). It did wonders for my daughter! Love the bird stickers...Paige had the same ones! I know you've already posted about comments you get about having twins, but the comments you get with the helmets...oh-my. One lady told me "I needed to be careful with such a little lady" and someone asked me if I dropped her. People do not think before speaking!

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