Week 2

one week down

I realized today that I'm now part of an exclusive club. I met some friends at the mall for a play date for Eva. This was the first time I took Xander out with his helmet. I wasn't embarrassed; I had actually forgotten until a woman looked at me and asked "How is the band going?" I told her it was our first week, but it was OK. She then told me her son had one too when he was little.

We later went to the bookstore, and a woman there said her daughter had one (she also told me how carefirst pays nothing EVER). We had a nice conversation. It was odd, as we were using terms that you don't hear or use unless your kid has a screwed up head. I'm sure no one understood us, but it was nice to meet another person. Then in the food court, while I was waiting for Eva's lunch, a woman came up with a baby in a stroller with a helmet on.

We're a small group, I think, but we're a proud group, proud that we're taking care of our babies. It felt good. I didn't feel like some outsider with the kid in the funky helmet. I felt like a good mom who was doing the right thing.

It was a good day.

Xander's Band Week 1

We are decorating. This week, it's guitar/Jimi Hendrix theme (although I didn't get a Hendrix sticker). Eva didn't even notice!

Sleep

No one told me he wouldn't sleep... there's been a lot of crying, mostly from me.

Xander's first day

This morning we went to Cranial Technologies to get Xander's band. He was an angel. The band was a little different than I had imagined, although I've seen a lot. It wasn't as shocking to see him in the band as I thought it would be, although I did get a little teary. It's hard to get sappy when your 2 year old is commanding attention.

We practiced putting the band on and taking it off. I think we have it. Right now it kind of moves around a bit. But I've been told that it won't move as much as he grows.

Today I had to take it off every 3-4 hours to check for redness... and he has some red spots. So we wait for them to go away before putting the band back on. He's sweating like a fountain in this thing, so our air conditioner is way down to keep him cool for now until he adjusts to it. He's still cute, and I was feeling I might feel weird taking him out, but I'm not. I'm proud of us for doing something for him. We're good parents.

The bad thing is that I accidentally deleted all of the photos from this morning, so I took some more at home. Here he is playing in his exersaucer. He's not bothered at all.

And an adorable picture of him sleeping. My swaddled, banded babe!

Tomorrow we decorate. I'm thinking guitars and music notes first! Then maybe the sea-theme for our trip to Grandma's and Pop Pop's.

Last days without the band

Xander's been doing great at the chiropractor. He has been falling asleep in his car seat after an adjustment with his head turned to the left! So it's working on his neck. He's been sleeping well afterwards too. I hate to think about what the band will do to that.

I thought it would be good to get some pics of Xander before he gets the band. Even if we did get pics and took it off, I worried he would have some skin rash or funny hair stuff from the band. So we got these beautiful shots of our little diva first, after which she promptly turned back into a 2-year old. So no good pics of the two, but a really cute one of X man who was tired and hungry. He had his tongue out in all of his other pics. Here is one of the last times we'll see that head for a while! Tomorrow is the day!!

The good thing was that we got a family pictures with no tears and even a smile from Eva. Damn I look old!

Measuring the Noggin

Today we went to Cranial Technologies to have X-man's head measured... which consisted of 15 camera shots of his noggin. From that they make a 3D mold of his head and then the band.

It's such a long drive to Annandale, and the thought of doing that once per week on top of the hour + commute Eric and I both have is not fun, but we'll do it. Since there aren't many locations for CT, I feel pretty lucky that we only drive 1 hour. Xander was his usual self... slept on the way in, sucked his hand, and just looked cute waiting for the appointment. Look at that chin! Which one?

Eva went with us today. I was hoping she would see a baby or two with the band on, but that wasn't the case. She just played in the waiting room with daddy and decided it wasn't a good day for potty training.

I had to go back with Xander alone since someone had to watch the big monster in the waiting room. It was really great. There was a different PT, I can't remember her name, from Charlotte helping out. She was so sweet! She brought in the stocking for Xander's head (they put them in pantyhose like a bank robber!) and just put it on his head, then played peek-a-boo with him with it. He smiled at her! Then she put it over his face, and he didn't even cry. It is a VERY freaky thing to see. I got teary, but not in a sad way. It's just pretty freaking odd...

Here he is, Xander Mander getting ready to rob a bank (he really should go through with it so we can pay for his treatment!).

Is this not the scariest thing? He was such a great patient! Eric said he looks like the Micheline man... or Alfred Hitchcock robbing a bank! Poor PT. She was pregnant and totally not expecting to have to lift such a large load!!

Look at those arms!

Still cute with his head in hose!

After the pictures Xander decided he needed to eat... and talk at the same time. He was in a great mood but couldn't decide if he needed food (um, maybe not) or to tell me about his experience. The PT then showed us the 3D image of his head. It looked so much worse, the ears and the flat parts. She showed me how they'd encourage his head to grow in the flat places, that his face and forehead would even out and his ears would line up better. She also told me how to stretch him without a fight - looks like we've been doing it right!

Next Friday the band comes in. Hopefully, X-man will handle it as easily as he did the hose on his head!

Tomorrow we're off to the chiropractor again!

Xander's first trip to the chiropractor

What I don't understand is why no one tells parents about this condition. Why isn't it stressed about sleeping position. We could certainly catch it early enough then, or at least know if he has torticollis and we could have worked on that. I guess most people think the head will just work out.

So Xander met with my chiropractor today. I LOVE her, she knows we aren't made of money and she waives our copay so we can continue treatment. I saw her all through my pregnancy, and was adjusted today as well. They put me on electric stim and then the chiro and the receptionist watched him for me. He had a great time.

So she noticed the tightness in the left side of his neck, and did a little massage and adjusting with an activator. He did great, didn't cry, and is now sleeping like a "baby!" She said he might sleep longer after an adjustment, and he sure did! So we go back to see her on Friday. Thursday we get the mold made. I'm going to take pictures of that... just have to get a camera first.

Pictures from Cranial Technologies

It really doesn't look that bad, if you can even see it. In the bottom pictures you can see how his head is flat on the right, but really rounded on the left. Yes, I know he's HUGE.









Here you can see the right ear is forward, and in the 2nd picture his cheek is more forward as well. Also, you can see from the top how his head is shaped.


The band won't help with the ears, since they're connected to the muscle. So we have to do stretches 5x/day. Now you try that with a 3-month old. Doesn't work at all.


Monday I'm taking him to the chiropractor with me to see if she can sort out the muscle issues. Hopefully, she can.

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.