Saturday, August 1, 2009






This is our baby boy Alexander Anthony Ulreich.



He was born on a Monday afternoon, April 27, 2009. He was three days old in this picture.








At 2 months old, we noticed that Xander didn't like to look to the left...












His first smile picture... looking right as usual!











And at his two month well-baby check up, our NP, Miss Sharon, told us his head was pretty flat on one side and his ears weren't lining up. I remembered this with Eva a bit and figured it would work itself out as he sat up more. However, Miss Sharon suggested we go to Cranial Technologies in Annandale, VA to have a PT show us some repositioning techniques and stretches. I wasn't convinced he needed that, so I asked her if we could wait. She said we certainly could wait until his 4 month check up and see if it had improved.

We tried everything to adjust his sleeping position. We purchased a plagiocephaly sleep positioner, which he hated. It was too small for him. Xander is a HUGE baby and this just didn't work for him. We tried everything to keep his head to the left, and it seemed to work for a while, but we finally decided to go have him evaluated at Cranial Technologies.

On July 23 we went in for the evaluation expecting some repositioning techniques and stretches. They took photos of him in various positions which I'll post later. It was obvious that not only did he have a flat spot on the back of his head, but that his ears didn't line up and he looked a bit lopsided from the top. What I didn't expect was for the PT to tell us that he had "moderate to severe" plagiocephaly (flattening of the head) and she recommended the cranial band (basically a helmet) to reshape his head. The flattening was causing one side of his face to be larger and they are starting to realize that it can cause jaw and vision problems when kids get older if it isn't fixed.

So we left Cranial Technologies with a lot of questions and many tears on my part. The band costs $3600. Little, if any of it, would be covered by our insurance. We're still waiting to find out what they'll cover. You see, Carefirst BCBS feels that it is completely cosmetic and rarely pays for any portion of the treatment. Our Pediatritian told us that if it affects the face, which it does for Xander, they're supposed to pay, but the people at CT told us that the insurance companies look at the measurements and decide if it's bad enough to treat. So insurance people decide if my kid needs treatment without respect to the doctor's diagnosis at all. I hate to say I'm hoping that Xander's plagiocephaly is bad, but I hope it is because we can't afford it.

We have since decided to go forward with the treatment because we don't want to feel that we had a chance to do something for him and decided not to, and with the help of "family loans" Xander will be on his way to having a round head and a more symmetrical face. Next Thursday we go in for the casting of his head, which is now done with pictures rather than an actual cast. The helmet or DOC band will be ready the following Friday.

Xander will wear this band for 23 hours a day for the next 8 to 12 weeks. We're hoping for 8 weeks.

This is where we're going.... http://www.cranialtech.com/

You can see how many of the kids have their bands painted and decorated. I did buy a bunch of stickers to do some themed decorations of his band once we get it. I'll probably change them once a week just to keep it light. I think we'll start with a monkey theme, to get Eva on board. I know she'll be pretty freaked out it.

After he gets the band, we'll have to go in weekly to have it adjusted. It's about an hour's drive.

I'm very concerned about his sleep. He's only recently started to sleep through the night, and I know this will just screw with that. We just moved him from his cosleeper to the crib, but I have a feeling he'll be sleeping next to me most of the nights in the beginning. He's not a cryer, and I'm hoping this doesn't change anything. The band is pretty lightweight, so it shouldn't be too uncomfortable.

Right now I'm just taking all the bare-head snuggles I can get with him. Only having an hour to cuddle my baby's head each day just isn't enough. I hope the time goes by fast.

5 comments:

  1. This comment has been removed by the author.

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  2. laurie!!!
    i will be following your posts!
    you are doing a wonderful job as a mother...sending love your way, always.
    hoping 8 weeks will suffice.
    shame on your insurance company.
    have you looked into NORD?
    http://www.rarediseases.org/
    not sure if plagiocephaly is covered under this, but it's worth some investigating!
    xoxoxo
    a.

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  3. This may be a hard eight - twelve (eight hopefully) weeks on you guys but when you look back it will seem as though it passed in a blink of an eye. Kids are adaptable and I bet he will be fine once he gets used to the band. Thank God you had a good nurse who was able to diagnose this early on while it can be corrected. Do you ever wonder what happens to the souls of Insurance agents? UGHH. We will be thinking of you and Xander.

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  4. What an adorable baby! He's such a cutie. I know it will be hard on you guys while he's wearing the band, but it really is a short time in the scheme of things. Remember how quickly time flew with Eva? And, her reaction may be a function of your reaction since she's still so young. If you act like decorating and wearing the band is a fun thing, she may get on board. Hey, maybe you can make a fake one for her to decorate and wear also when she chooses to.
    Sorry about the insurance co., I hope they come on board. Makes me wonder about the people who say that health care reform would mean the gov limits your health care options...may very well be true, but right now it's the insurance companies limiting things, and how is that better?
    Best of luck. Deep breaths...he'll be ok.

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  5. Thanks Everyone. Raia, I like the idea of having Eva help decorate, and I'm sure she'll be excited about it! Although, I can see random stickers showing up on his head!!!

    I put a hat on Xander yesterday just to see her reaction and she said, "oh, Xander's helmet" Not sure where she got that!

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