Re: Plagio at the Park

[Guest guest]

Leila,

I find myself noticing it on other babies as well. It's hard to think quickly enough to talk to them. And, deciding whether to do so always takes me a minute. I think back to my own situation and wish that someone had suggested a helmet, but to be honest, I probably would have responded that our pediatrician was aware and had told us it would round out. Now, if that person had impressed upon me the age restrictions for treatment, I might have pushed the issued with the ped. So, each time, I try to decide.

The worst time was when I saw a child that looked around 2 at Burger King. This child had severe facial asymmetry, but I'm not as good as spotting plagio so I had to look hard. I'm assuming it was there. However, there are probably other causes of facial asymmetry so I wasn't sure. Regardless, I decided not to say anything since it was too late for a helmet and the family was with grandparents.

We had an online friend with a baby with a cone head. This mom knew that had a helmet and we talked to her all the time about the brachy and our process. She worked in the field of public health so we just assumed that she had decided against treatment. We just found out that, after changin pediatricians, they've discovered that her 15-month old has craniosyntosis. Who knows when the sutures fused, but now he's looking at surgery. Her other pediatirican should have caught it, but it's a good thing that he retired.

So, the questions is when and how to say something. It was easier to bring up the topic when she was still in her STARband, but now I have no jumping off point.

By the way, the CST is going slowly. It's hard to see any difference and getting to sit for the exercises is hard. I have to hold something back from her and say "head first." and then she'll sit. Last night, it was the watermelon. I really hope that it's doing some good. At this point, if I can just get a little bit of visual improvement, I think we'd move on. If we can keep her width from growing and get her a little bit longer, than that'd be the goal. Plus, I want to make sure that she trul y is not asymmetrical. She was hand measured by the PT to be 91.3 so I think I'd take a 90. Or, if her hair grows enough so that I really don't see it, then we might stop.

Plagio at the Park

We went to the park this weekend and had a picnic there. We sat on the grass right where the tracks of the little choo-choo train go. The girls love to see it pass by and always wave bye-bye to the passengers. After our picnic lunch, we went for a ride ourselves on the train. Guess what? As we passed the area where just 10-15 minutes prior we were having lunch, another family was sitting there with a baby in a stroller wearing a DOC band! I wanted so bad to go back to that spot and have a conversation with the family, but the girls wanted a ride in the carousel instead, so we did that. Then just after that, we went for ice cream and just sat outside the icecream shop. Soraya, my oldest was taking her sweet time eating hers in 90+ degrees weather, so I had to help her. A family of four passed us by. One of their boy was 3 or 4, the other was in the stroller 10 to 12 months old. I don't like to stare but it seemed to me like the baby had brachy. He was pretty bald so it wasn't too hard to spot. Then I looked at his brother and his head was fine. By then they had passed me and I had to revert my attention back to Soraya who, as expected, was making a mess eating her ice cream. My husband who was a little further down the path keeping an eye on Maysa who was going her own way came back my way and said: "Did you see that baby? he reminded me so much of Maysa when she was a baby". My husband never sees anything like that so for him to say that means that the baby really did have a misshapen head.

Why all this story? Because I keep kicking myself for not pointing it out to his parents and educate them about plagio/brachy. I don't even mind if they had gotten mad or if they had gotten offended. I'll probably never see these people again. I really really wish I had said something because I still have that picture in my head of that little boy in his stroller with a head as flat as a board and I wonder if he'll ever get help.

I hope that this family meets up with the one with the baby in the DOC band and strikes up a conversation...

Leila,

Maysa, 19 mo, DOC band Grad 5.26.09

www.mymaysa.wordpress.com

[Guest guest]

Next time, I'll try to think faster.

As for CST, I stopped taking Maysa a long time ago when I realized that she was miserable for the 45mm to an hour that we were there. I think that it did help, but it just wasn't fun at all. Add to that the fact that we were getting good results with the bands.

I will tell you this though: Maysa's hair is really covering whatever's left of it. Like I said in an earlier post, her head looks more round than oval but the most important thing to me is that it doesn' look flat or asymmetrical anymore. Maysa has so much hair that I cannot keep it down anymore. It is too hot, it gets in her face and she gets sweaty. If I leave it down, it ends up looking like a fluffy dark cloud around her face, quite funny!

One pony tail in the back looks best on her right now. It makes her head look longer. In the front, I cut her hair a little and part it on the sides with a bow and her forehead doesn't look so pronounced on the sides either. Here is what she looks like now from the font: http://mymaysa.files.wordpress.com/2009/08/dsc_3526.jpg

I took some other good top and profile pictures of her this weekend but didn't get a chance to upload them yet. I'll post a new entry on her blog once I do.

I am saying this just to let you know that once 's hair grows you'll stop focusing on her brachy and completely admire how cute she is. I do it every day with Maysa, even in the morning or after nap time when she looks the funniest with her head in a dark cloud.

Leila,Maysa, 19 mo, DOC band Grad 5.26.09

www.mymaysa.wordpress.com

From: <melanie.watson@...>Subject: Re: Plagio at the ParkPlagiocephaly Date: Monday, August 17, 2009, 9:54 AM

Leila,

I find myself noticing it on other babies as well. It's hard to think quickly enough to talk to them. And, deciding whether to do so always takes me a minute. I think back to my own situation and wish that someone had suggested a helmet, but to be honest, I probably would have responded that our pediatrician was aware and had told us it would round out. Now, if that person had impressed upon me the age restrictions for treatment, I might have pushed the issued with the ped. So, each time, I try to decide.

The worst time was when I saw a child that looked around 2 at Burger King. This child had severe facial asymmetry, but I'm not as good as spotting plagio so I had to look hard. I'm assuming it was there. However, there are probably other causes of facial asymmetry so I wasn't sure. Regardless, I decided not to say anything since it was too late for a helmet and the family was with grandparents.

We had an online friend with a baby with a cone head. This mom knew that had a helmet and we talked to her all the time about the brachy and our process. She worked in the field of public health so we just assumed that she had decided against treatment. We just found out that, after changin pediatricians, they've discovered that her 15-month old has craniosyntosis. Who knows when the sutures fused, but now he's looking at surgery. Her other pediatirican should have caught it, but it's a good thing that he retired.

So, the questions is when and how to say something. It was easier to bring up the topic when she was still in her STARband, but now I have no jumping off point.

By the way, the CST is going slowly. It's hard to see any difference and getting to sit for the exercises is hard. I have to hold something back from her and say "head first." and then she'll sit. Last night, it was the watermelon. I really hope that it's doing some good. At this point, if I can just get a little bit of visual improvement, I think we'd move on. If we can keep her width from growing and get her a little bit longer, than that'd be the goal. Plus, I want to make sure that she trul y is not asymmetrical. She was hand measured by the PT to be 91.3 so I think I'd take a 90. Or, if her hair grows enough so that I really don't see it, then we might stop.

Plagio at the Park

We went to the park this weekend and had a picnic there. We sat on the grass right where the tracks of the little choo-choo train go. The girls love to see it pass by and always wave bye-bye to the passengers. After our picnic lunch, we went for a ride ourselves on the train. Guess what? As we passed the area where just 10-15 minutes prior we were having lunch, another family was sitting there with a baby in a stroller wearing a DOC band! I wanted so bad to go back to that spot and have a conversation with the family, but the girls wanted a ride in the carousel instead, so we did that. Then just after that, we went for ice cream and just sat outside the icecream shop. Soraya, my oldest was taking her sweet time eating hers in 90+ degrees weather, so I had to help her. A family of four passed us by. One of their boy was 3 or 4, the other was in the stroller 10 to 12 months old. I don't

like to stare but it seemed to me like the baby had brachy. He was pretty bald so it wasn't too hard to spot. Then I looked at his brother and his head was fine. By then they had passed me and I had to revert my attention back to Soraya who, as expected, was making a mess eating her ice cream. My husband who was a little further down the path keeping an eye on Maysa who was going her own way came back my way and said: "Did you see that baby? he reminded me so much of Maysa when she was a baby". My husband never sees anything like that so for him to say that means that the baby really did have a misshapen head.

Why all this story? Because I keep kicking myself for not pointing it out to his parents and educate them about plagio/brachy. I don't even mind if they had gotten mad or if they had gotten offended. I'll probably never see these people again. I really really wish I had said something because I still have that picture in my head of that little boy in his stroller with a head as flat as a board and I wonder if he'll ever get help.

I hope that this family meets up with the one with the baby in the DOC band and strikes up a conversation. ..

Leila,

Maysa, 19 mo, DOC band Grad 5.26.09

www.mymaysa. wordpress. com

[Guest guest]

The funny thing is that did not mind at all during her latest appointment. Our PT is very good at playing with her and distracting her while doing the exercises. Yes, she probably doesn't get as much in as she could if she just worked the whole time, but somehow she gets to not notice what she's doing. She works exlusively with babies and toddlers. We bring along a DVD and they have lots of toys in the room. She talks to about what she's playing all while she's doing it. Maybe it works better there because everything is novel. All I know as that I can't get the same thing at home. For now, I'm settling on once a day. I figure that's better than nothing - plus, she's not a severe case. I just don't want to miss whatever chance I have left for fixing her head. I'm sure that even CST will take longer to work once she gets older. No matter what, I've decided to be done by age 3. I don't want her to remember me working on fixing the shape of her head. That'd give her a complex for sure and that's what I'm trying to avoid.

I really do hope that I won't mind 's mild brachy that is left once her hair grows in. I actually notice the flatness when she's in a ponytail, but she doesn't look too bad with pig tails. Maybe it's because all kid's heads look a little wider with pig tails. I also see it most from the back and there is the flat spot there and that flat spot does bother me the most. The problem is that she still has baby fine hair and I don't want to wait to decide if that's the case. My hair is super thick so I'm hoping that's what she'll end up with.

Plagio at the Park

We went to the park this weekend and had a picnic there. We sat on the grass right where the tracks of the little choo-choo train go. The girls love to see it pass by and always wave bye-bye to the passengers. After our picnic lunch, we went for a ride ourselves on the train. Guess what? As we passed the area where just 10-15 minutes prior we were having lunch, another family was sitting there with a baby in a stroller wearing a DOC band! I wanted so bad to go back to that spot and have a conversation with the family, but the girls wanted a ride in the carousel instead, so we did that. Then just after that, we went for ice cream and just sat outside the icecream shop. Soraya, my oldest was taking her sweet time eating hers in 90+ degrees weather, so I had to help her. A family of four passed us by. One of their boy was 3 or 4, the other was in the stroller 10 to 12 months old. I don't like to stare but it seemed to me like the baby had brachy. He was pretty bald so it wasn't too hard to spot. Then I looked at his brother and his head was fine. By then they had passed me and I had to revert my attention back to Soraya who, as expected, was making a mess eating her ice cream. My husband who was a little further down the path keeping an eye on Maysa who was going her own way came back my way and said: "Did you see that baby? he reminded me so much of Maysa when she was a baby". My husband never sees anything like that so for him to say that means that the baby really did have a misshapen head.

Why all this story? Because I keep kicking myself for not pointing it out to his parents and educate them about plagio/brachy. I don't even mind if they had gotten mad or if they had gotten offended. I'll probably never see these people again. I really really wish I had said something because I still have that picture in my head of that little boy in his stroller with a head as flat as a board and I wonder if he'll ever get help.

I hope that this family meets up with the one with the baby in the DOC band and strikes up a conversation. ..

Leila,

Maysa, 19 mo, DOC band Grad 5.26.09

www.mymaysa. wordpress. com

[Guest guest]

-

Have you thought about getting her hair trimmed? That makes a huge difference in

the way it grows and, at least in my case with both of my children, had it

growing in a LOT thicker. That first haircut can make all the difference.

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5.5

>

>

>

> From: <melanie.watson@...>

> Subject: Re: Plagio at the Park

> Plagiocephaly

> Date: Monday, August 17, 2009, 9:54 AM

>

>

>  

>

>

>

> Leila,

>

> I find myself noticing it on other babies as well. It's hard to think quickly

enough to talk to them. And, deciding whether to do so always takes me a minute.

I think back to my own situation and wish that someone had suggested a helmet,

but to be honest, I probably would have responded that our pediatrician was

aware and had told us it would round out. Now, if that person had impressed upon

me the age restrictions for treatment, I might have pushed the issued with the

ped. So, each time, I try to decide.

>

> The worst time was when I saw a child that looked around 2 at Burger King.

This child had severe facial asymmetry, but I'm not as good as spotting plagio

so I had to look hard. I'm assuming it was there. However, there are probably

other causes of facial asymmetry so I wasn't sure. Regardless, I decided not to

say anything since it was too late for a helmet and the family was with

grandparents.

>

> We had an online friend with a baby with a cone head. This mom knew that

had a helmet and we talked to her all the time about the brachy and our

process. She worked in the field of public health so we just assumed that she

had decided against treatment. We just found out that, after changin

pediatricians, they've discovered that her 15-month old has craniosyntosis. Who

knows when the sutures fused, but now he's looking at surgery. Her other

pediatirican should have caught it, but it's a good thing that he retired.

>

> So, the questions is when and how to say something. It was easier to bring up

the topic when she was still in her STARband, but now I have no jumping off

point.

>

> By the way, the CST is going slowly. It's hard to see any difference and

getting to sit for the exercises is hard. I have to hold something back

from her and say " head first. " and then she'll sit. Last night, it was the

watermelon. I really hope that it's doing some good. At this point, if I can

just get a little bit of visual improvement, I think we'd move on. If we can

keep her width from growing and get her a little bit longer, than that'd be the

goal. Plus, I want to make sure that she trul y is not asymmetrical. She was

hand measured by the PT to be 91.3 so I think I'd take a 90. Or, if her hair

grows enough so that I really don't see it, then we might stop.

>

>

>

>

>

>

>

> Lilypie Baby Ticker  Lilypie Baby Ticker  Lilypie Baby Ticker

>

> Plagio at the Park

>

>  

>

>

>

>

> We went to the park this weekend and had a picnic there.  We sat on the grass

right where the tracks of the little choo-choo train go.  The girls love to see

it pass by and always wave bye-bye to the passengers.  After our picnic lunch,

we went for a ride ourselves on the train.  Guess what?  As we passed the area

where just 10-15 minutes prior we were having lunch, another family was sitting

there with a baby in a stroller wearing a DOC band!  I wanted so bad to go back

to that spot and have a conversation with the family, but the girls wanted a

ride in the carousel instead, so we did that.  Then just after that, we went

for ice cream and just sat outside the icecream shop.  Soraya, my oldest was

taking her sweet time eating hers in 90+ degrees weather, so I had to help

her.  A family of four passed us by.  One of their boy was 3 or 4, the other

was in the stroller 10 to 12 months old.  I don't like to stare but it seemed

to me like the baby had brachy.  He was pretty bald so it wasn't too hard to

spot.  Then I looked at his brother and his head was fine.  By then they had

passed me and I had to revert my attention back to Soraya who, as expected, was

making a mess eating her ice cream.  My husband who was a little further down

the path keeping an eye on Maysa who was going her own way came back my way and

said: " Did you see that baby?  he reminded me so much of Maysa when she was a

baby " .  My husband never sees anything like that so for him to say that means

that the baby really did have a misshapen head. 

>

> Why all this story?  Because I keep kicking myself for not pointing it out to

his parents and educate them about plagio/brachy.  I don't even mind if they

had gotten mad or if they had gotten offended.  I'll probably never see these

people again.  I really really wish I had said something because I still have

that picture in my head of that little boy in his stroller with a head as flat

as a board and I wonder if he'll ever get help.

>

> I hope that this family meets up with the one with the baby in the DOC band

and strikes up a conversation. ..

>

> Leila,

> Maysa, 19 mo, DOC band Grad 5.26.09

> www.mymaysa. wordpress. com

>

[Guest guest]

Hi ,

We did get 's hair trimmed about 5 weeks ago. It did seem to help a little, but not much. There just isn't much hair there yet.

Plagio at the Park > >  > > > > > We went to the park this weekend and had a picnic there. We sat on the grass right where the tracks of the little choo-choo train go. The girls love to see it pass by and always wave bye-bye to the passengers. After our picnic lunch, we went for a ride ourselves on the train. Guess what? As we passed the area where just 10-15 minutes prior we were having lunch, another family was sitting there with a baby in a stroller wearing a DOC band! I wanted so bad to go back to that spot and have a conversation with the family, but the girls wanted a ride in the carousel instead, so we did that. Then just after that, we went for ice cream and just sat outside the icecream shop. Soraya, my oldest was taking her sweet time eating hers in 90+ degrees weather, so I had to help her. A family of four passed us by. One of their boy was 3 or 4, the other was in the stroller 10 to 12 months old. I don't like to stare but it seemed to me like the baby had brachy. He was pretty bald so it wasn't too hard to spot. Then I looked at his brother and his head was fine. By then they had passed me and I had to revert my attention back to Soraya who, as expected, was making a mess eating her ice cream. My husband who was a little further down the path keeping an eye on Maysa who was going her own way came back my way and said: "Did you see that baby? he reminded me so much of Maysa when she was a baby". My husband never sees anything like that so for him to say that means that the baby really did have a misshapen head. > > Why all this story? Because I keep kicking myself for not pointing it out to his parents and educate them about plagio/brachy. I don't even mind if they had gotten mad or if they had gotten offended. I'll probably never see these people again. I really really wish I had said something because I still have that picture in my head of that little boy in his stroller with a head as flat as a board and I wonder if he'll ever get help. > > I hope that this family meets up with the one with the baby in the DOC band and strikes up a conversation. .. > > Leila, > Maysa, 19 mo, DOC band Grad 5.26.09 > www.mymaysa. wordpress. com>