A conversation with Nolan...

Nolan: 'Mom. Where is Charlie Brown? Is Charlie Brown at work? Is DAD Charlie Brown?'
Me: 'No honey. Dad is not Charlie Brown.' (chuckle)
Nolan: 'I am Charlie Brown.'
Me: 'I thought you were Linus. You're carrying around that blue blanket.'
Nolan: 'No. I'm not Charlie Brown. Uncle Ben is Charlie Brown.'

Carter's Exit Photos

As of October 13th, Carter no longer has to wear his helmet. I am attaching his exit photos. I'm not going to say much about them. I think they speak for themselves. The progress he made is nothing short of remarkable. Looking back, I can't believe his head was that bad. BUT it was and I have to say I was in denial. I'm so glad we went to see the therapists at Cranial Tech. Amy was our consultant and she was so kind and gentle. Cranial Tech is an amazing company doing wonderful things for children and families. I will never hesitate to recommend them to someone else. Carter keeps shaking his head back and forth, I think it must feel like when you get several inches of hair chopped off and suddenly your head feels light as a feather. Other than that, the transition does not seem to be bothering him. He slept through the night last night and I anticipate another succesful night tonight. Feel free to leave a comment with questions. Have a look at Carter's improvement:

October 13...No more helmet

Most of you know this already, but we found out last week that Carter will be in his DOC Band for about 3 more weeks. Our graduation day will October 13! Just in time, for Carter's First Birthday! Now, his head will not be 'perfect', but the strides we have made in the last 5 months have been nothing short of amazing. I was so worried and concerned about this process when we found out that we were doing it. Now that the end is here, I realize the whole experience was not nearly the ordeal I thought it was going to be. We've had many compliments on his helmet, what a cute baby he is and questions about why he wears it. My whole attitude was to tell people why he wears it and tell them that it's been a great experience. Then in the future they can pass that information onto the information if the need arises. Carter is such a great baby and this helmet never really seemed to phase him. He is the perfect kid for this experience. Now, there will be a bit of sadness when it comes off. I know him in it and that will be different. He rocks it don't you think?! But, at the same rate, when he cries I can cradle him behind his neck and get cheek to cheek. That really isn't something I can do right now and I've really it. Bittersweet.

Nolan's First Day at Sara Walker 3's

Grandma Toni says Gerber Baby...

What do you think?

Grandma thinks I look like a Kewpie Doll...

What do you think?

Nolan Quotes

Nolan: Look Mom! It's New York City. Daddy lives there.

Me: No, honey. Daddy lives with us. He works in the city.

Nolan: In MY red brick house?

Me: Yes, honey. YOUR red brick house.

Grandma Janet: Nolan, Carter can read books with us. OR he can just chew on the covers.

Nolan: (Looking at Carter's crib) Where are his covers?

Me: Nolan, I have to clip your nails. They are out of control!

Nolan: What? Did they run out of batteries?

Grandma Janet: Nolan, tell mommy about the whales you saw on the computer today.

Nolan: Baluga, Orca and Humpback!

The Painting Process

New Helmet

Carter will get his second DOC Band a week from Wednesday. So I have been debating about the new paint design. I don't like to do anything to 'baby' as you can tell from his current helmet. I am contemplating doing something similar and keeping with the flames. We have gotten lots of compliments and he looks really really cool. But I've also thought of using a tattoo design or going with a skull and crossbones since we are fixing his head. All of these will still keep with the motorcycle look. But I am open to suggestions and if you'd like to chime in with a comment please feel free to do so. I've added some of the designs I've found online to give you an idea of what I'm thinking.

Carter's 8 Week Before and After Photos

We went to Cranial Tech today and had digital photos taken for the insurance company. It helps explain to them why Carter needs treatment. Now we wait to see if they will cover the second DOC Band. The results are nothing short of amazing. I didn't expect to be so emotional when Amy showed them to me. But the images really spoke for themselves and let me know that all this worry and stress was worth it.

When you look at them look at Carter's front on photo and you will notice that he had one cheek larger than the other, his right eye and ear weren't in alignment and drooped lower than his left. Also, his temples were too wide for his head, the top of his head squared off and his forehead sloped. This was all a result from the flattening pushing his brain forward. The picture on the left is before and on the right is after. Look at the difference. I can't believe how symmetrical his face is in comparison to his before photo. I hope you can see the improvements. Also, the last 2 photos on the second page really illustrate how much of his flattening has disappeared. I can not explain to you the utter amazement I have felt every time I look at these. I have always known there was improvement, but really couldn't grasp it until Amy showed them to me side by side.

Please ask if you have any questions. I just feel that these images are a testament to what Cranial Tech can do for children. These changes occured over 8 weeks! That's it. Pediatrician's really need to get on board with this technology. It's so easy to do now and I know it's going to be the best thing for my son.

Coxsackie and Toy Story

Poor Carter John has a nasty nasty virus called Coxsackie. Funny name?! Evidentally, it's named after a town in New York on the Hudson, where it was first discovered. Who knew? Anyway, it presents with a fever, diahrea and blisters. OH, the blisters. Carter has one on the end of his cute little nose, on his chin and in his diaper area. His toushy looks like it hurts so bad, but he doesn't fuss much. He did before we had the 102 fever under control. Since it's a virus, there isn't a thing we can do for him, except make him comfortable. I just hope Nolan doesn't get it. It's not pretty.

On another note, Nolan went to his first ever movie today, we had a 'mommy date'. I took him to see Toy Story 3, which I have to say is kind of dark and a little scary...especially for a movie named TOY STORY! Regardless, Nolan was excited to go and had a great time. We got popcorn and a booster chair for Nolan so he could see. It took him until the lights went out to understand that we don't talk at the top of our lungs about everything we see. I think he entertained the family in front of us. But once the lights were out, he was really great! Eventually, he ended up sitting on my lap and during one section his heart was racing...like I said it's a little scary. At least I think so. All in all, it was a good experience. They only thing I regret is that he saw the preview for the Thomas movie. I hope he forgets, I don't think I can sit through that one!

How could I forget?!?!

Carter has had his first word a couple of days ago. It's Momma. YES! It's not Dadda (Nolan's first word), not ball (Nolan's second word), not Sophie, not bottle or Nolan. Nope. He is Momma's boy. He's been saying 'mamamamamamama', when he gets tired or hungry. So I started pointing to myself and saying 'momma'. One day he just said it. Like that. 'Momma.' Like he always knew who I was and it was on the tip of his tongue. 'Momma.' Now, he'll say it and grab my face, so the recognition is there. Ahhhh...What a love!!

USA! USA! USA!

A little pre-game chat hoping we go through. I will be keeping the kids in today to watch the matches. A friend of mine, who is English, is bringing her kids over for a play date. I'll have the USA match on the big TV in the living room and the England match on the other TV in the library...picture in picture on both mind you. If both England and USA win they go through. Passed that it's going to get complicated. Let's hope it's not 2 more draws and decided only on goal differential. I don't think I could handle that!! USA! USA! USA! And because I am an England fan (despite their obvious disfunction this year) ENGERLAND! ENGERLAND! ENGERLAND! I'm only adding one picture...you know where my loyalty really lies!!!

Good News, Bad News

Well, I don't know if you would call it BAD news, just 'not what I wanted to hear' news. Having said that, the bad news first. Looks like Carter will need a second round of treatment. Meaning, once our 12 weeks (we are currently in our 6th week) in this band are up we will have to get a second one. *insert big sigh here* So, in 2 weeks at our next appointment, Carter will need to have more digital photos like the ones I posted here. Those will show how far he has come and how much farther we have yet to go. Then we start the whole process of getting insurance approval. Looks like we will be waiting to hear back from the insurance company while we are in Oklahoma over the July 4th holiday. The new photos have to be taken 4 weeks before the end of this initial treatment because it usually takes the insurance company a week to 2 weeks to come back with approval. As soon as that is sorted out we have to get a new DSI (3-D digital imaging of Carter's head) and then it takes 2 weeks to get a new DOC Band made for him. I'm not sure I can do the decorating myself the second time. I was stressed about it the first time and as cute as it turned out, I'm not sure I can do that again. I know it sounds silly, but I assigned a lot of weight to it turning out cute. Silly, I know.

Now, the good news. We are seeing a LOT good growth. The bottom half of his skull is rounding out nicely. You can actually see suture marks where the growth starts and that's great. His asymmetry is improving as well. Carter has a sloping forehead. It still slopes but the initial point of the slope has moved forward. I see an improvement in his right ear, which always curled out more than the left. I had always thought it was a birth defect, but the plagiocephaly had pushed one ear forward of the other and was causing his 'Stephen Colbert ear' as I liked to call it. Now, it looks so much more even. We are going into a second band because we want to see more rounding throughout his entire head and the height of his head at the crown is still abnormally high. So, we are going in the right direction! Now, there is a possibility that we won't have to spend another 12 weeks in the second band. It might be shorter than the first. Let's cross our fingers and hope for that!

Cute Photos of the Boys (and Sophie too!)

Poconos and Crawling

This weekend we had an invite from Justin & Destiny to join them at their parent's lake house in the Poconos. It was a last minute trip, but a great one. We were so fortunate that the drive was only 2 1/2 hours away and the boys were so good. They are great little travelers. This adventure was more for Nolan than Carter. They have access to a great little beach with a kids pool. Nolan spent hours in the sand and running into the water. He loved splashing around with his feet. At first he was timid, but the more he was in the water the farther in he went. He wears a 'tortoise shell' which helps him swim. It's not a flotation aid, but keeps him upright and on top of the water, so he has to do the work. He really seemed to enjoy himself. Nolan has been having a tough time at swim class. He's timid in the water, scared to jump in or even swim sometimes. So, we've stopped going. It's an actual regression and Chris and I felt that he was assigning some kind of negative stigma to the JCC pool and class in particular. So we have been looking for ways to get into the water where it's a completely fun experience. I just want him to be a kid and enjoy summer. Maybe we'll pick up swimming classes again later.
In the meantime, Carter was doing a great job hanging out at the beach. He got a little extra time out of his DOC band in order to avoid a heat rash, but this was just one morning. He wasn't sure what to make of the kiddie pool. I held him the entire time. He loved observing what was going on around him, but seemed petrified if he got in past his waist. While at the Lake house, we discovered Carter's new favorite toy. An empty water bottle. You buy them all kinds of things you think will be stimulating or interesting, but no. What do they like? Water bottles and cardboard boxes. Touche. While playing with his water bottle, Carter crawled for the first time at the lake house in the Poconos. It wasn't far, maybe 6 feet, but Carter REALLY wanted that water bottle and worked his way over on his hands and knees. I'm not ready to have two mobile children, but it looks like I don't have a choice. Congratulations Carter!!

4 weeks in the DOC Band

We've been in the DOC Band for 4 weeks now. We had an appointment yesterday and we are showing positive results. Amy said that the lower shelf on the back of his skull is really starting pop out. It's definitely noticeable. With that moving out the highest point of his skull has moved forward, which is what we want to see. When we went for our initial appointment Gina said we might need to go through 2 treatments. I asked Amy if she thought this might be the case, but she didn't want to speculate this early. We will have at least another two months in this particular band and if we still need more adjustment we will then have to go to another band. I'm really hoping to be done by the end of July. I'd prefer not to spend the entire summer in it. Chris has gifted both boys with super sensitive skin. So Carter is prone to heat rash while wearing the helmet. Not only will he get it on his head, he will get prickly heat on his chest too. So this is something we have to watch out for. Another mom on Facebook has found a dog bed that you wet down and it stays cool for several hours. She uses it on her child's stroller and finds that it really helps. I think I'll invest in the same thing for Oklahoma. As you have gathered, I'm pretty concerned about the heat and humidity there. I think I'll go online shopping now!

Carters Before Photos

I've wanted to share these for a while, but now I finally have them scanned. These are the initial photos and observations take by Cranial Technologies. After seeing these photos, (especially when the talk about how it was affecting the front of his face) I knew in my heart something had to be done. Us mothers, we have a tendency to see our children through our own little smoke screen. I've always seen Carter as the beautiful fat baby that he is. I think my mind rounded his head out for me. I knew it was flat, but didn't understand how flat until I saw these photos. I seriously thought they would have laughed me out of the room, when I went to see Cranial Tech. On the contrary, Carter was a severe case and looked like many of their Brachycephaly before and after photos. It's pretty amazing. This will also give you a benchmark for when we finally get the helmet off, we can look back and compare. Again, comment if you have any questions.

In case you can't read it I am going to type in the observations Cranial Tech made here.

PHOTOSTUDY

pg1.

(top) Carter is a 5.75 month old male referred to Cranial Technologies for the treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening and associated facial assymetry. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.

(bottom) Increased posterior head height; sloped forehead

pg2.

(bottom)

Left occipital flattening; right frontal flattening; increased head to width length ratio: left eye and cheek anterior to right.

IKEA and the Peabody Museum

We went to Carter's fitting last week. He's already showing improvement, which a great sign since we are only 3 weeks into treatment. Amy did say, we still have a long way to go. That's obvious, but it was nice to see some results. I had a return to make to IKEA so on the way back I took Nolan into their playarea. You can actually drop off a potty trained toddler for up to an hour while you shop. It's like the best idea EVER. So Carter and I had a little time to mess around while Nolan got to stretch his legs from spending so much time in the car. He loves it there. As a big treat to Nolan we drove to the Yale campus and went to the Peabody Museum. Think of a mini Museum of Natural History. The great hall has dinosaur bones. Nolan knew the names of all of them. I had to read the plaques to make sure he was right, and sure enough, he was right about all of them. Nolan got to see an apatosaurus, a stegosaurus, a t-rex skull, a triceratops skull and a velociraptor. He was enamored. He ran from dinosaur to dinosaur, pointing them all out. It really made his day, which was good since Carter gets a lot of the attention during fittings. We have a zoo, a beach and an outlet mall to visit. OK, OK! That last one is for me.

This week...

On Wednesday, we were able to continue with treatment and Carter resumed his 23 hours on, 1 hour off schedule. The heat rash seemed terrible on Saturday, but only took a couple of days to heal. Once the red spots were gone we could resume. I have made a general rule: 70 degrees and under we take the band off every 2 hours for a minute to dry off Carter's head and the inside of the band...70 degrees and over, we do the same every 1 hour. So far, it's been working. Carter never ever wears socks or footies. Which I really don't mind, it means I always have access to those cute, fat piggies! He seems to have adapted really well, this second time around. We go back to Cranial Tech on Wednesday for another fitting. I'll update you more then.

In the meantime, Nolan has been showing off Carter's 'round head', he announces it to anyone and everyone while we are out. I actually think it helps to break the ice. It's obvious some people are unsure about the band and what it's for, but those people are few. I've been more surprised, by how many people approach us to either tell me that their niece, nephew, granddaughter, grandson...had one or to tell us how absolutely adorable Carter looks in his. Let's be honest, he is SO cute it's hard to resist. BUT maybe, I'm a little partial!

Carter Update:

Turns out that Carter had a severe heat rash. He kept sweating against the helmet and that caused his skin breakdown. I can't begin to tell you how bad it stunk! Who knew? Cranial Tech called me first thing on Monday morning and got us in immediately. They didn't seem bothered by the rash and said it's very common. Carter sweats at night, so we have to make an effort to keep him cool in bed. No more footies, run the ceiling fan and towel his head off if he gets up at night. During the day, we have to take the Band off every couple of hours and towel off the helmet and his head.

The day Carter got the infection it was only 70 degrees outside. So I'm a bit apprehensive about the summer. When it gets really hot I think we'll have to take a few small breaks throughout the day in order to avoid situations like these. I'm his mother so of course I worry, but all in all, it was good news from Cranial Tech and Carter will be back in treatment starting tomorrow.

Skin Breakdown

So, one of your major concerns with the DOC Band is skin breakdown. Cranial Tech makes you do skin checks every 3 hours the first 2 days of therapy. If there aren't any concerns then you can proceed to the 23 hour a day schedule. Carter's skin was recovering nicely from his pressure areas so we were able to go to the 23 hour schedule on time. But today (our 3rd full day of treatment) we all noticed a funny odor and I could see something yellowish coming out from the band. So when I took it off, Carter had a huge 'angry' spot on his right side and across the back. The inside of his band has turned yellow on the edges which is a major concern for me. I've already washed the helmet per Cranial Tech's instructions and Carter will not be wearing it until we get into see someone on Monday. Sensitive skin runs in this family and Carter might just be cursed in that department. His father and brother both have skin issues. I'm just concerned about what happens next. Especially now that there is a yellowing to Carter's band. I'll let you know more after our next appointment.

Helmetized

On Tuesday Carter had his fitting with Cranial Tech. It was a difficult appointment for me, but Chris and Nolan were there. We wanted to make sure that Nolan included in the process. He walks around now saying 'See my brother's round head!?' He means the helmet, but we told him that Carter was getting a helmet so he'd have a round head. I guess he shortened it.

Our first 2 days home we had to do skin checks every 2-3 hours. They want you to keep an eye on the pressure points where the helmet is applying resistance. You don't want anything to red or dark, they call them 'angry' spots. If he has 'angry' spots you want to see them disappear within an hour. The skin needs to recover, if it doesn't you can have problems. Fortunately, Carter didn't have any of these. So we could proceed as planned, from here on out Carter has to wear for 23 hours out of the day. During the one hour, I have to wash it everyday in rubbing alcohol and in the summer months the helmet can start to stink from all the perspiration. Great. We got DOC Band put on in May...Carter will wear it for a minimum of 3 months...May, JUNE, JULY. We'll be in nasty Oklahoma heat and humidity in July. That'll smell fantastic!!

So then painting process began. It was definitely trial and (A LOT of) error. But in the end it turned out really cute. I had to apply 3 coats of acrylic paint. The third coat crackled instead of looking smooth. I cried, but then just went with it. Then I put his name on in sticker and then painted his flame details. I wish I could have enjoyed the process more, but I was stressing out about it and having an allergy attack all at the same time. It was a mess. Once I had painted it all I then had to apply three coats of Modge Podge to keep the paint from peeling. The Modge Podge really helped it look shiny and polished and disguised some of the cracked paint. I'll probably do a coat of Modge Podge a week to help maintain the AWESOMENESS.

It's going to be quite a process, but I'm glad we are finally in it instead of just talking about it. Again, if you have any questions about this please comment and I'm happy to answer them!!

Nolan hiking with Dad & Uncle Ben

Some inaudible/slightly audible dialogue:

Nolan: I like my mommy.

Chris: I like your mommy too.

Nolan: I like you too dad.

Chris: Thanks Bud.

Nolan: I like you.

Chris: I like you too bud.

Carter needs a helmet...

As most of you know, Carter now needs the DOC band which is an orthopedic helmet. Carter has a severe case of Brachycephaly (flat head syndrome) with a minor case of Plagiocephaly. The difference between the two is simply the location of the head flatness. Most of Carter's flatness is directly on the back of head and Plagio is usually located on one side or the other. This is condition hasn't really existed until recently and with the awareness of SIDS came the Back to Sleep Program. Before SIDS most parents placed their babies on their bellies to sleep, but my generation has been taught to do the exact opposite. At this crucial stage of brain and head development, the soft skull is now lying on a flat surface that essentially deforms the head. Young babies also have a tendency to be in bouncy seats, car seats and play mats, all flat surfaces. Without the ability to sit up the child has no opportunity to get their weight off the back of their head. So, it's plain and simple. My son has a very large noggin and he lied on it too much. Therefore it is flat in the back, the crown of his head is too high and it has pushed the majority of his brain forward of his spine. Don't be alarmed. This does not seem to affect his milestones, brain or cognitive development. I just don't want him to be an SNL alien skit for the rest of his life!

So, Tuesday, through a company called Cranial Technologies, Carter will be fitted for a DOC Band to correct this defect. The 'helmet' only weighs 6 ounces and he will have to wear it for 23 hours a day for the next 3 months. We will be traveling weekly to Clinton, CT for fittings, which is about an hour and 15 minute drive. We went last Tuesday and he had a digital 3D image taken of his skull and from that they make a cast of his head and from that they handcraft his helmet. Each helmet is unique to each child and we will be painting ours so people feel more comfortable approaching him. The poor child is such a flirt and so social, I can't image him not being able to make eyes at ladies in the grocery store. I have attached a couple of links below so you can understand his condition. Please feel free to leave questions or comments for us. I am happy to answer anything you might be curious about. I will also try to buy more memory space on my page and post some before and after photos for you so you can understand more about what's going on. We have taken this on with gusto. Now that we know our insurance will cover his procedure, we are just running with it. As soon as I have them, I will post photos of Carter rockin' the helmet!

http://www.cranialtech.com/

http://www.brachycephaly.info/