Plagiocephaly Appointment #3: Fine Tuning

This is the fourth in a short series of posts about what to expect when getting a helmet. Here's links to the full series.

What to expect when getting a helmet
Appointment #1: Measuring
Appointment #2: Fitting
Appointment #3: Fine tuning

At the last appointment we were given the brand new helmet with instructions to ease her into wearing it. We were also given instructions to look out for spots where the helmet was tight or rubbing. We would recognize these spots because they would leave red marks on her head. Each time we took the helmet off, especially for the first week, we were supposed to check for red spots and keep track of how long it took them to fade away.

If any spots were not fading away within the hour her helmet was off or were becoming raw or irritated we were supposed to leave the helmet off and schedule an adjustment as soon as possible. That didn't happen for us. There were some spots that were red each time, but they were all mild enough that we could wait until the next appointment.

After she had been in the helmet about a week we had our fine tuning follow up appointment.

This appointment was very straight forward. The doctor asked us how we were doing, if we'd noticed any reoccurring red spots, and if we had any other concerns.

Then he examined her head. I pointed out where she had been getting red each time.

What happened next was the funny part. He got out a stocking and put it over her head like at the measuring appointment. Then instead of pulling out the reflective stickers he pulled out a tube of lipstick!

He smeared a bit of lipstick on her head where the helmet was rubbing and replaced the helmet. After wiggling the helmet around a bit he took it back off and showed me the inside. There were lipstick marks in the helmet showing exactly where it was rubbing her head. That made it easy for him to go shave those spots down to give her more space there.

That was it. The helmet was custom made and fitted just for her. Since then our appointments have been very simple. Once a month we visit. He takes her measurements and compares them against the previous measurements so we can see what progress she's made. He asks if we've been having any problems, checks for redness, and sometimes makes small adjustments.

She still is annoyed when we hold her still to get the helmet on or off. Sometimes she cries then. When we take it off she spends lots of time touching her head. It's a strange sensation to her. Other than that she doesn't mind wearing it at all.

Here's wishing as smooth and enjoyable experience for other helmet parents.

-Click here for the full Plagiocephaly Saga-

Plagiocephaly Appointment #2: Fitting

This is the fourth in a short series of posts about what to expect when getting a helmet. Here's links to the full series.

What to expect when getting a helmet
Appointment #1: Measuring
Appointment #2: Fitting
Appointment #3: Fine tuning

Sorry this post has been so long coming. I had it all written, published, I went to add one more link and the computer messed up and lost it all. It was not the best day already, so I was really frustrated and needed to step back and write about other things for a couple weeks. So I did and now I'm fine.

A week or so after the measuring appointment we went back in for the initial fitting. Between the appointments the company that makes the helmets had taken the 3D computer model of my daughters head and used that to make a styrofoam type model exactly her size and shape. They had then added what looked like plaster over the model to make the model head nice and round. They then used the improved model to make the helmet.

This process makes sure that the helmet is not smaller than the baby's head. Her doctor told me over and over, the helmet works with the baby's growth. It won't squish the too big parts back into place. Instead it sits right up against the too big parts and has extra space inside over the too small parts. When the head grows it will fill in where there is extra space instead of trying to push out everywhere else.

We went in and the doctor had the custom helmet all ready for us. Also that head model for us to see.

The first time the doctor put it on it was way too long over the forehead and down the neck and it didn't have big enough holes for the ears. They do that on purpose. It's much easier to cut off extra than to add more. He made marks to tell him where to trim it and went to the back room.

He repeated the process a few times. He'd try it on, make marks, and trim it down some more until he was satisfied.

During the process my little one was a little annoyed. She didn't know what was going on and a stranger was looking at her and touching her and putting something on and taking it off. She fussed a little bit, but my husband and I worked out a system where one of us would hold her sitting upright out on our knees and the other one would be near her face talking to her and holding up her bottle. That calmed her down quite a bit and gave the doctor space to work and see all the way around her head.

When he was satisfied that it was fitting better he drilled some little holes for ventilation and we were done.

She didn't go straight to wearing it all day. We had a schedule to ease her into it during the day. It went something like this:

Day 1: 1 hour on, 1 hour off

Day 2: 2 hours on, 1 hour off

Day 3: 4 hours on, 1 hour off, start wearing it for naps, but not overnight

Day 4: 8 hours on, 1 hour off, wear it overnight

Day 5: start normal schedule, 23 hours on

We were sent home with instructions to check her head every time we took the helmet off for red spots and to see how long it took to go away while the helmet was off. If anything was rubbing wrong we could schedule an appointment for him to fix it right away, but if things were going well the next appointment would be in a week.

From day 1 she disliked getting the helmet on or off just liked she dislikes getting dressed. She doesn't want someone to hold her still and mess with her.

Once the helmet is on though, she is completely fine with it. We never had a problem. That picture with the title was taken during the first week with the helmet and you can see she is happy with it.

Some kids might have a harder time, but usually the parents mind a lot more than the kids do.

Also the helmet looks great with steampunk costume goggles.

Plagiocephaly on Pinterest

We've been dealing with Plagiocephaly for a little while now and gathering tons of information. I am a researcher. I like to get all the information I possibly can before making a decision.

It makes life easier in some ways. When I come to a decision I'm confident in it.

It makes life a lot harder in others. Decisions on the fly are not a strength for me, and if I do have to make a quick decision I keep second guessing myself and regretting it.

But, that's not what I wanted to talk about today. So moving on.

I did all this research. After sifting through a million confusing bookmarks, and trying to remember where I heard what I finally thought to myself 'Self, why don't you just make a board on Pinterest. That's how you keep track of everything else.' and then myself thought back to me 'You know what, that is a great idea.'

So I have created a board where I will be compiling the most useful information I find on that subject.
It will include:

• Repositioning and other Prevention and Early Treatment ideas for those who haven't made it to helmet stage
• Helmet cleaning tips
• Helmet decorating ideas (because that's just fun)
• Amusing helmet anecdotes (if I can find any)
• Etc.
• Etc.
• Etc.
• Basically anything I find amusing or useful as related to the subject.

Here's a link to the board. Check it out! Hopefully it will be useful to some other parents out there.

Enjoy!

Plagiocephaly Appointment #1: Measuring

This is the second in a short series of posts about what to expect when getting a helmet. Here's links to the full series.

What to expect when getting a helmet
Appointment #1: Measuring
Appointment #2: Fitting
Appointment #3: Fine tuning

After the initial consultations and getting approval from the insurance (hallelujah!), they needed a custom model of her head. They send this model off to the shop where the helmets are made.

This model can be either physical or digital. To get a physical model they make a plaster cast of the baby's head (see image below). Eep. No wonder there are so many horror stories out there.

Head Casting Image by Protoflux

Thankfully there is another option: digital models. The process to make a digital model is much less messy and uncomfortable. Basically the doctor will just make a scan of her head.

He started by putting a stocking over her head. He cut a hole for her face and tied it under her chin like a bonnet.

He put a black cape over her shoulders so they wouldn't interfere with the scanner. Then he put little silver stickers all over her bonnet and face. The scanner uses the stickers as reference points.

The end result was comical instead of scary and uncomfortable. You can see she wasn't phased at all.

(It's really hard to take a picture of a baby and hold her at the same time)

Once she was all suited up, the doctor took out his scanner. It basically looked like an oversized handheld barcode scanner. (Next time I'm at the office I'll try to get a picture of it.)

He then began to wave the scanner around her head to scan different angles. Things got a little tricky here. My curious little one kept wiggling to face the scanner making it difficult to get a good scan of the back of her head. With much persistence we were able to get the angles we needed and an impressive 3D model of my baby's head appeared on the computer.

To complete the order, we got to decide which helmet we wanted. We were able to choose between a STARband and a STARlight. It was a tough choice but we decided to go with the STARband. Then we got to choose the color or pattern. Then we were done! The order was sent off.

No mess, no tears (well no more than usual).

-Click here for the full Plagiocephaly Saga-

Plagiocephaly: What to expect when getting a helmet

I was really nervous going into the orthotics office to get a helmet. I was really didn't know how the whole process would work. I didn't know if it would be uncomfortable or even painful for her. I looked around, but didn't find much solid information about what to expect.

It seems like people only put stories out there if they are 'worth telling'. The ones that are interesting, where something goes wrong or something unexpected happens. If things go by the book, people don't really write about it.

So there I was, more nervous than my little one, having read only horror stories about the process. I expected the worst. I felt like a scumbag mommy playing with my little one in the waiting room when I knew what awaited her. They called us back. And then... Things went smoothly. The doctor was competent and my little one handled it all like a champ. The process was really was fairly straight forward and really interesting and we now have a custom helmet that I am thrilled with.

The whole process took 3 short appointments that I will discuss in more detail in the next few posts.

This is the first in a short series of posts about what to expect when getting a helmet. Here's links to the full series.

What to expect when getting a helmet
Appointment #1: Measuring
Appointment #2: Fitting
Appointment #3: Fine tuning

-Click here for the full Plagiocephaly Saga-

Summer Infant SuperSeat Review and Plagiocephaly Update

This is a review for Summer Infant 3 Stage SuperSeat. This is basically a small baby seat similar to a Bumbo brand seat with a round activity tray. With the tray removed, the seat can buckle onto most standard chairs and act as a booster. It can be purchased through Amazon.com or Babies"R"Us.

 

Image from http://www.summerinfant.com/

I mentioned before in a post entitled The Latest Mommy Guilt : Plagiocephaly that my daughter was having trouble with plagiocephaly (misshapen head). It was present at birth. In that post, I mentioned that we were getting ready for an appointment with an orthodics office. At that appointment they measured her head and she was outside the normal limits, but close. They suggested some exercises and gave us one month to try "aggressive repositioning" (keeping her off the back of her head as much as possible).

We immediately began looking for options to help her enjoy tummy time more and to keep her off her back when she wasn't doing tummy time. After looking at different baby seats, this is the one we chose.

Pros

Usable from a young age
The instruction manual says that this product can be used with children as young as 4 months old. I'd say it is most likely safe for younger children if they are holding their head up well.  My little one was 3 months when we started using it and seemed just fine.

Disclaimer: This is not official. I'm not a doctor. I will not be responsible for anything that happens. Watch your child carefully when using this product, especially if they are below the recommended age. Stop using it if there is any sign that they are not ready for it.

Wide age range
The orange foam in the seat is an insert. When the child outgrows that seat the insert can be removed allowing the child to use the seat for a longer period of time. The instruction manual says the seat can be used  for children up to 4 years old. This is a big advantage over the Bumbo. Being short on space, we didn't want anything that we'd use for only a few months and then have to store for the next kid.

Toy tray
The 360 degree toy tray spins so you can give the little one access to different toys. My little one loved the toy tray. As soon as I put her in she began grabbing at the toys. Before that I'd never seen her so immediately interested in anything plastic.

Large leg openings
Reviews I read about the Bumbo say that the leg openings are rather small and not well suited to chunkier babies. We have a healthy, robust little one with beautiful roly-poly thighs and have never had a problem with this seat. She has plenty of space.

Booster seat functionality
We needed a way to keep her off her back while we were out at restaurants with friends. At that time she was much too small for a restaurant highchair. We wound up bringing this to many restaurants. It has buckled easily and fit on every chair we've tried. Even the wide, rolling Olive Garden chairs, though the straps were barely long enough. She loves being up where she can see everyone at the table instead of in a car seat sling.

Portable
It's a little bit bulky, but I've never had a problem with it. I'd compare carrying it in restaurants and other public places to carrying a loaded diaper bag. We've taken it almost everywhere with us.

Cons

Gaudy Colors
This is a personal preference issue but where is it written that everything for babies has to use every bright shade they can possibly think of?

Difficult to clean under the spinning toy
My little one spit up once on top of that spinning ball and some of it pooled up in the base of the toy. That was a major pain to clean.

Babies can't spin the tray themselves
At 5 months now my little one seems to know that the tray spins, but cannot spin it to get at the different toys herself.

Can't use tray while using the booster functionality
It would be nice if this seat could work as a highchair, or if she could have the toys she can't drop to play with while we eat.

Insert is difficult to remove and replace
This isn't really a problem if you are planning on using the seat for only one child at a time. You would have to remove the insert once when the child outgrows it and replace the insert to use the seat for the next child. It would be really annoying to use this seat for 2 children of dramatically different sizes.

Toy tray is annoying to get on
Putting on the toy tray is not terribly difficult. It is just annoying to align everything correctly. It is not half so hard to take the tray off.

Things to look out for

Babies arms can get caught when rotating the tray
Occasionally when my daughter has had her arm outstretched while we are spinning the toy tray, her arm has gotten caught by one of the two taller toys. Those toys are not rigid so it hasn't really hurt her, but it has startled both of us.

Feet fall off
There are small plastic covers that snap onto the bottom. I assume they are to protect the floor. They don't stay on well. Being small and fairly neutral in color, it is not immediately obvious when they fall off. I don't know if they are the right size to be a choking hazard. As soon as I noticed that one fell off I took them all off and got rid of them. I'm not worried about my floors. If you are, I'd suggest buying a non-slip bathroom mat or something to put under the seat.

Overall
We have really enjoyed having this product. Our little one enjoys it. It keeps her contained, safe, and nearby when we can't hold her. We've only had this product for about 2 months, so I can't say much about the long term durability, but it was 2 months of almost constant use so I think I have a pretty good idea of the functionality. Using this seat really helped with the bi-lateral symmetry of her head which is what we were most worried about. (However, her other measurements are still off enough that we will be getting a helmet.)

The Latest Mommy Guilt : Plagiocephaly

Tomorow we get to go to another doctor. We're visiting a specialist of some sort to talk about my baby's head.

My little one was born with a pretty misshapen head. Her head size was in the 97th percentile (bigger than 97% of all babies her age). My hips are a bit bigger an I'd like them to be, but they are most definately not in the 97th percentile.

She was a big baby. I'm not a big person. I have some extra fluff right now, but I'm fairly short and have a narrow bone structure. I fully expect her to be several inches taller than me before she becomes an adult.

Towards the end of pregnancy I looked pretty ridiculous. My belly was so big that even my maternity clothes kept rolling up or down and I had a hard time keeping my baby bump covered.

Her doctor tells me she was probably wedged up against my pelvic bone for a while while she was forming. She was born with a misshapen head, a still neck, and a click in her hip. Even though there was nothing I could have done about it, I felt a lot of guilt. It was my body that didn't give her enough room. My body... Me... My fault.

I cried over that so many times. I had hurt my baby. I wasn't giving her the best start in life. Thankfully the hip resolved on its own within a couple months, and her head shape started to even out. I started to stop feeling guilty all the time... At least about that.

Now they've referred us, the guilt is back. Her head has evened out quite a bit, but it's a slow process. They want to help it along a bit while she's still young and adaptable.

I keep wondering what more I could have done. We kept the bassinet so she'd face a blank wall if she turned on her flatter side. We tried to reposition her head after she'd fall asleep. I'd have her in a moby wrap for a good portion of each day. I'd sit on the correct side when we were both in the back seat of the car. We got an upright baby jumper as soon as she had enough head control. She even takes a lot of her naps on her side in my arms.

Really, she loves being on her back. She likes to be able to play and look around on her own. For the first 3.5 months tummy time was a torture for both of us no matter what tricks we tried. Her head being disproportionately large compared to her body, she has a harder time keeping her head up in front of her. Only on the last couple weeks has she stopped screaming through the whole thing.

I'm hoping since her head control and tolerance of tummy time has changed so much recently the new doctor will will suggest more exercises and observe her for a while. I don't want a helmet. I feel that I have wronged my child first by not having room for her and second by giving in too easily to what she wants.

I don't want my mommy fail broadcast to everyone who sees us.