Yeah Baby, you did it!

  Well, what seemed to be a long journey has officially come to and end for us. Amelia has graduated from her band! She completed her treatment on October 5th and we had her exit appointment and final adjustment the week before. She had the Dsi imaging done for the last time and once again she did not go along with the process. I don't think she feels that wearing a stocking over her head is a great fashion statement!  Anyways, she survived the process and the final images were put side by side with the original pictures. We noticed that her head shape is much longer than it was previously and also the front right side of her head had filled out quite a bit along with her filling out on the bottom of the left backside.

The picture below is of the mold they made of Amelia's head at the start of her treatment. I decided to show pictures of the helmet on the mold because you can see more clearly the changes to her head shape.  At the clinic they call these little guys "headsicles."  They would put this mold next to her at the adjustments and see which areas she was making progress in. I know I'm a little weird, but I thought it was really neat to be able to keep this rock hard statue of Amelia. I have no idea what I'm going to do with it but it's neat to be able to have a preserved, tangible piece of her at 4 months old.

 

The next picture is of the top of the molds head. The gaps that I circled shows exactly how much her head has grown in the flattened areas. When she started the treatment the foam was completely level and then it was shaved down in the problem areas every week. That's a lot of growth in 9 weeks!

 

 

You can also see from this front view the large gaps where her head is now filled in.

 

 

This whole treatment process has been a huge blessing in our lives. Thanks to the internet and good friend of mine (who gave me a DOC Band pamphlet that she saw in her doctor's office,) I became aware of what plagiocephaly was. I have learned that you have to become a diligent advocate for your child in order to see results sometimes. I think we are all brought up in a society where you take your doctor's word as final and are scared to go against their advice. Amelia's first doctor told us her head would reshape on her own and not to worry about it. I'm so glad we got a second opinion! She was just plain wrong on this one. 

I also want to thank the staff at the Phoenix office. I felt that Amelia was in great hands the entire time.

Graduation day is fast approaching!

   

  I realized today that it has been a month since my last post. So I thought I'd better update everyone on all that has been going on. I can't believe Amelia has already had the band on for seven weeks. It seemed like it took forever to get the diagnosis and start the process of banding her and now we're already at the tail end of her adjustments.

   Well, in the weeks since my last post I redecorated her helmet. One little speck of dirt caused me to have to redo the entire thing. I started to pick off the corner and before I knew it there was unstoppable peeling. I have learned my lesson since and I actually ended up liking the second design better. Here is the new design.

 

 

    Amelia has made tremendous progress and her head is much more round than it used to be. She still has two weeks left and one more adjustment. Because we drive from quite a distance, they are going to combine her final adjustment and her exit visit together in one appointment. They are going to do the DSi procedure scans again and we get to look at the changes that have taken place. I'm very excited to see how visible the changes are side by side!

 

    I will say however, that her head is still not completely round and won't ever be.  The top of her head still slopes to the left and her face is still slightly asymmetrical, BUT (and it's a big but) the changes are astounding and we don't regret for a second going through the effort. Her jaw looks great and that was our biggest concern. Plus you really have to stare at her face and know what to look for to see the asymmetry. she'll also grow hair on her head at some point which will make the "sloping" a non-issue.

      

 

These pics are so cute! The ipad really needs to have a better camera. The first one is on the way home from our appointment last week and the second is of all three of my girls having fun. Paige is the oldest, Emma is the one with hair covering her face and of course, you know Amelia.

 

I'll write another post next week after her appointment. Bye for now :)

 



  

A new way of life

       Amelia has been adapting very well to life with her band.   She doesn't seem to be bothered at all that she has it on.   In fact, she seems crankier on her one hour a day break than she does at any other time of day.   I don't know if her crankiness stems from me taking off the band, her nightly bath or her trying to roll over to the coffee table and banging her head without the added protection of the band as a buffer.  Whatever the reason, the "on" time is much more pleasant.   All my fears about not being able to manage her while wearing the band and the complications I thought it would cause really hasn't happened at all.

 
        The stares Amelia's been receiving in public have been interesting to say the least.   I think the decorations help, but people don't know quite how to ask why she's wearing the band.  I have had a couple people comment on how cute it looked on her and I could tell that they wanted to ask what was wrong with her but can't quite figure out how to phrase it in a polite way.   A woman serving in our church nursery was sooo relieved when I told her what the band was for.   She thought something horrible had happened to Amelia.   The few people who have asked have been very nice and I like being able to educate them about plagiocephaly.   The freakiest thing is that random strangers come up to her and call her by name.   I keep forgetting that I put her name on the front of the band and I freak out for a half a second before realizing why they know it.

      Wednesday was Amelia's second adjustment appointment.   I was excited because it was the first one that I got to go to.   They have a mold of her head and they compare it to her head now.   It's amazing to see that her little noggin is already starting to change.   The right side has already begun to fill in.  It's so encouraging to see that kind of progress!

Amelia's skin is much better today

Amelia's skin around her ears and on the neck line looks much better this morning. I called the office first thing and they told me I needed to come back down today. Unfortunately, it is a work night for Tim, so I had to take all three girls with me. We got there around 1pm and they shaved down some more places where there seems to be too much pressure applied. She still needs to go back this Wednesday for her first adjustment. I hope this is the end of the skin nightmare.

Amelia has her band

     July 18th was a big day. Amelia went to her Dsi appointment down in Phoenix, AZ. I noticed that the drive to Phoenix pretty much looks the same as the drive to Orange county. Dirt followed by rocks, some more dirt a little city traffic and about four hours of the kids asking when we would get there. All in all the drive wasn't too terrible and the girls handled it pretty well.

     The Dsi appointment was pretty cool. The Dsi stands for digital surface imaging and the equipment looked like it came straight out of a scifi movie. I posted a picture from Crainal Tech's site so you can get an idea of what it looks like. Basically, the baby sits on the stool held up by a clinician and the machine takes digital images of the skull. To accomplish this, Amelia had to wear a stocking over her head to completely smooth the surface. She did not like the stocking over her face and decided she was not going to cooperate with the process at all. She pushed with all her strength and fought both myself and the poor woman holding her. At last we gave her a pacifier under the stocking and she was good to go. She looked like a little baby bank robber :) Once the images were taken they sent them to the lab to make her band and we were off to Cracker Barrel for breakfast.

   

   

    Our next appointment was August 1st. We arrived at the office around 9am. The appointment lasted about an hour. They had to check to make sure the band wasn't irritating her skin. Barb, the clinician shaved down a few spots and we waited for Amelia to become comfortable with the band while we went over a list of instructions. All was well and we headed home. Of course we stopped by Cracker Barrel for lunch again, Emma insisted on it.

We were instructed to take the band off every three hours for the first two days, clean it with rubbing alcohol and check for red spots lasting for more than a few hours.The first two days she reacted great to the band. I, of course took the off period opportunities to decorate it with stickers and Mod Podge :)

  After the first two days of 3 hour checks, she needs to wear the band 23 hours a day. Friday was her first full day and unfortunately, when I took the band off around 6pm to wash it and bathe her, I noticed that her skin had rubbed of in parts on the back of her head. We had to take off the band for the rest of the weekend and see what they say to do when I call first thing tomorrow.

We've been approved!

We just found out the our insurance approved Amelia's treatment. We are scheduled for her digital imaging appointment on July 18th and her band will be on August 1st. Here we go!

Amelia's DOC band Evaluation

     Tim and I decided that it was best that I take Amelia to the appointment and that he would stay home with our other two girls. We want Paige and Emma to not have to make the drive as much as possible. Amelia and I drove to my mom's house in Temecula and then drove to Orange the next day. I'm glad my mom went with me to the appointment. The whole experience is a lot to take in especially without Tim there with me.

     The appointment started off with a photo shoot. Amelia was totally the star of the show. They had all kinds of cool toys that kept her attention while taking the pictures. They also took measurements of her head and got her medical history.
       I met with Glynna who was the clinician at the Orange office. She started off by letting me know that Amelia's brain development looked great. She has been hitting all of her milestones and the sutures in her skull are allowing her brain to grow. Well that was great news and a great transition in to the not so good news. You can see in the third pic that her jaw is misaligned quite a bit. I didn't even realize that was a problem. If this remains uncorrected it can lead to TMJ syndrome. You can also see in picture 2 that her head is curved towards the left. The first pic shows that the right side of her face is more full and the left side is more defined. You can also see the difference in the ears. Her ears are subject to chronic ear infections if not treated. Not to mention that if we do not get treatment her face will stay asymmetrical permanently.
      The good news is that she will only need the helmet for 6 to 10 weeks, but she will have to come in every 7 days to get it adjusted. We decided to do the appointments at the Phoenix office because it's only a 4hour drive each way verses 41/2 to Orange. Now we just have to wait for the insurance to approve their portion (very small portion) and then we will set up her DSi appointment.
  

Meet Amelia

     This is my beautiful daughter Amelia. She is our third daughter and a cute little bundle of personality. She is now 4.5 months old, but I started to notice something wasn't quite right pretty much from day one. She was perfectly healthy, but I kept noticing that one eye seemed a little off from the other. I couldn't quite place what the problem was exactly, I just knew it didn't seem symmetrical. My husband thought it would correct itself and it was just because she was a newborn. I thought that may be the case as well so I let it go for awhile. The older she got, the more I started to notice it. I also noticed that one ear was lower and off to the side more than the other. She also favored sleeping on only the right side of her head.
    We went to the doctor and she said that Amelia had Torticollis. She also said the eye was swollen from constantly laying on the one side. I originally thought this as well and observed her sleeping for the next couple of days. I noticed she could move her head to the other side with out a problem she just didn't want to. I also noticed at that point that her head was shaped oddly. We went back to the doctor and she diagnosed her with Plagiocephaly.
    We were right in the middle of moving from California to Arizona when all this happened. This also meant that we had to wait for new insurance to kick in. I was terrified after reading about Plagiocephaly that her condition would become permanent, so I did everything I could to keep her off her head. Her head shape started to look better, but her ears were still pretty off. When we got insurance we took her to her new doctor and she confirmed the diagnosis and recommend we take her to Cranial Technologies for an evaluation. I set up an appointment with them out of their California office. The only locations are almost 200 miles away and their is nothing in the general vicinity to accommodate her needs. Major bummer!