Re: Maysa's latest report - 8 months post DOC band

[Guest guest]

That is wonderful the measurements confirmed the improvement! Thanks

for sharing. It gives us that are treating late more hope for

additional improvement.

-Kathy

L R wrote:

I took Maysa for another scan yesterday and I can't tell

you how happy I've been with her latest report. Read more in the link

below

http://mymaysa.wordpress.com/2010/01/27/hello-80s/

Leila,

Maysa, 2 yo. DOC band Grad 5.26.09

www.mymaysa.wordpress.com

[Guest guest]

Hi Kathy,

I'll try and post her report tomorrow with a little more about what the orthotist said but truly her growth has been amazing. I didn't expect the numbers to improve so much considering her age and the fact that her head circumference was already high on the charts...

There is hope, even for older kids.

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

Leila,

I tried to send you an email, but I keep getting a message that it wasn't delivered.

I think that this is wonderful news. I wonder how much of the improvement was in the month before the helmet got off. In any case, she improved nearly as much in the last 9 months as she did while in her bands. Yet, she clearly wasn't improving before her bands. This is so hard to explain and understand. It must be that ponytail.

I compared a recent semi decent head shot of from October to Maysa's current top view on your blog. Maysa's head is definately longer than 's. However, 's appears to be longer than Maysa's was when she graduated. I used your ruler trick and got some numbers that are better as the months go by. The problem is that my top view shot wasn't very good. So now I'm going nuts wondering what 's measurements really are and considering another visit to for an updated scan.

Re: Maysa's latest report - 8 months post DOC band

Hi Kathy,

I'll try and post her report tomorrow with a little more about what the orthotist said but truly her growth has been amazing. I didn't expect the numbers to improve so much considering her age and the fact that her head circumference was already high on the charts...

There is hope, even for older kids.

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

Wow Leila, this is the first I've seen your blog & read your story.  This is very encouraging.  Thank you for sharing!On Wed, Jan 27, 2010 at 7:59 PM, <melanie.watson@...> wrote:

 

Leila,

 

I tried to send you an email, but I keep getting a message that it wasn't delivered.

 

I think that this is wonderful news. I wonder how much of the improvement was in the month before the helmet got off. In any case, she improved nearly as much in the last 9 months as she did while in her bands. Yet, she clearly wasn't improving before her bands. This is so hard to explain and understand. It must be that ponytail.

 

I compared a recent semi decent head shot of from October to Maysa's current top view on your blog. Maysa's head is definately longer than 's. However, 's appears to be longer than Maysa's was when she graduated. I used your ruler trick and got some numbers that are better as the months go by. The problem is that my top view shot wasn't very good. So now I'm going nuts wondering what 's measurements really are and considering another visit to for an updated scan.

  Re: Maysa's latest report - 8 months post DOC band

 

Hi Kathy,

 

I'll try and post her report tomorrow with a little more about what the orthotist said but truly her growth has been amazing.  I didn't expect the numbers to improve so much considering her age and the fact that her head circumference was already high on the charts...

 

There is hope, even for older kids.

 

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com  

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report.  Read more in the link below

 

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

 

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

Leila,

I just used your ruler technique on 's computer 3D scan at her graduation. The number I got was 92.1 percent and she graduated at 92.2 percent. Not bad. I used the same technique on the picture that CT took in July and got 89.2 percent. Granted, it's not a computer scan, but still....

Now I just need to get a good picture and try this technique with it.

Re: Maysa's latest report - 8 months post DOC band

Hi Kathy,

I'll try and post her report tomorrow with a little more about what the orthotist said but truly her growth has been amazing. I didn't expect the numbers to improve so much considering her age and the fact that her head circumference was already high on the charts...

There is hope, even for older kids.

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

Hi,

I noticed her measurements are high.  I've been assuming that 's

head won't grow as much either since his head circumference is also

high.  His weight and height are not as high anymore and my older son's

head was much smaller.  Our ortho claims though that the head

circumference tends to stay on about the same growth curve.  's was

99% at birth and now it is 95%.

I'm interested in what the ortho said.

Thanks again.

Kathy

L R wrote:

 

Hi Kathy,

 

I'll try and post her report tomorrow with a little more

about what the orthotist said but truly her growth has been amazing.  I

didn't expect the numbers to improve so much considering her age and

the fact that her head circumference was already high on the charts...

 

There is hope, even for older kids.

 

Leila,

Maysa, 2 yo, DOC band Grad 5.26.09

www.mymaysa.wordpress.com

 

I took Maysa for another scan yesterday and I

can't tell you how happy I've been with her latest report.  Read more

in the link below

 

http://mymaysa. wordpress. com/2010/

01/27/hello- 80s/

 

Leila,

Maysa, 2 yo. DOC band Grad 5.26.09

www.mymaysa.

wordpress. com

[Guest guest]

,

You are probably right on the two numbers to got from the two previous pictures. And you are also right that the key is to get the right picture now to really have a better idea. I was able to get Maysa's latest good picture while she was sitting on her dad's lap at the computer watching an Elmo song on Youtube. She was fixated to the screen...

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa. wordpress. com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

,

I know that Maysa grew and improved a lot while in her DOC bands. No doubt about that. But looking at all the pictures I took of her, nothing too considerable happened between April and May. If you remember, I posted a blog entry not long after she graduated saying that we might have misssed a growth spurt and posted some back right side pictures that showed what I was seeing. I think that a lot happened then and that the rest happened the few months after that. I will also add that she doesn't sleep on her back anymore. Does sleep on her back?

My goal was always to get another scan of her head months after she graduated. I wanted to see how much natural improvement could actually take place and i wanted to know if her CI would really improve by 4% like I had read in a research about babies who didn't get treatment and who by the time they were 2 or 3 had had that kind of improvement.

I am still forever happy that we banded and that we saw even more progress after we were done.

Let me know if you are able to take a good shot of 's head now. I will tell you though that you will probably not be disappointed if you took her for another scan.

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa. wordpress. com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

used to sleep exclusively on her back. Now, she sleeps in multiple positions - side, stomach, and back. That is an improvement. I tried your ponytail trick, but I came in the next morning and it wasn't in her hair anymore. I don't know if she took it out or if it fel out. Her hair is still baby fine and not very thick.

I agree that there is no doubt that Maysa improved after the band. You can see this with the pictures that you took. I was just wondering whether she really graduated around 92 rather than 93. She was only 16 months at her graduation and was almost 21 months so I'm guessing that 's improvement was probably not as much. However, I do believe that there has definately been improvement and would love to get a good number on how much.

Right now, I am leaning towards taking for another scan, but I'm going to wait until after her next set of hand measurements to do it. I just have to get the courage to make that phone call. I'm hoping that will agree to do it- I think that they already see me as a little bit of a crazy mom because I wanted to stay in the helmet longer. I'm also wondering whether they will charge me since we did go through them for the band.

I can just imagine how thrilled you are at that 88 number. Some people may consider that to still be high, but it's in the 80's and for some of us, that's great. My original goal when we started treatment with was to just get her out of the 90's. It would be so great to get a computer scan number to tell me that we are there. She still has that flat spot. I think this is because her soft spot closed before she was banded. That may never change and is pretty much only noticable when her hair is wet.

Re: Maysa's latest report - 8 months post DOC band

,

I know that Maysa grew and improved a lot while in her DOC bands. No doubt about that. But looking at all the pictures I took of her, nothing too considerable happened between April and May. If you remember, I posted a blog entry not long after she graduated saying that we might have misssed a growth spurt and posted some back right side pictures that showed what I was seeing. I think that a lot happened then and that the rest happened the few months after that. I will also add that she doesn't sleep on her back anymore. Does sleep on her back?

My goal was always to get another scan of her head months after she graduated. I wanted to see how much natural improvement could actually take place and i wanted to know if her CI would really improve by 4% like I had read in a research about babies who didn't get treatment and who by the time they were 2 or 3 had had that kind of improvement.

I am still forever happy that we banded and that we saw even more progress after we were done.

Let me know if you are able to take a good shot of 's head now. I will tell you though that you will probably not be disappointed if you took her for another scan.

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa. wordpress. com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

Kathy,

I don't know if you've read my post where I posted Maysa's latest report, but I'll add that the orthotist probably thought that I was a little insane for bringing Maysa in for a scan at 2 years of age. He told me that at that age, there was nothing he could do and I told him that I understood, so he said, what can I do for you? After briefly telling him our story, I told him that I needed a post-band scan just for me, and he agreed to that.

He said that she looked perfectly fine and that there was no visual asymmetry that he could detect. He even said that she had a nice curve coming up from the base of her neck. He didn't think that her head looked obviously wide and said that her ears will keep moving back in place in time. He said all that before he scanned her. The scans basically confirmed what I have been seeing and it was nice to see that the CI that I had estimated just 5 days prior to the scan was exactly the same as what it is at Level 3: 88.4%...

At her 2 year check up, Maysa was above the 95th percentile for both head and weight and around the 90th for height. I don't see her slowing down any time soon...

How is doing at this point?

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

I took Maysa for another scan yesterday and I can't tell you how happy I've been with her latest report. Read more in the link below

http://mymaysa. wordpress. com/2010/ 01/27/hello- 80s/

Leila,Maysa, 2 yo. DOC band Grad 5.26.09www.mymaysa. wordpress. com

[Guest guest]

Hi,

That is wonderful news!  Thanks so much for sharing.

Thanks for asking about .  We've seen a tiny bit of visual

improvement even within the past

month, so that is encouraging.  head is now very mild, but I want

it normal.

I cannot say how I would feel about his head without the helmet.  The

only times I see him without his helmet are close up. 

When the helmet comes off his hair is matted down.  In the bath I

really see the plagio.  By the time his hair dries

and my husband combs it, his head looks pretty good, but then the

helmet goes back on.  The helmet is also causing some swelling that

temporarily throws the forehead appearance off.

I'm still hopefully 's head will keep improving and he will look

fine as he grows and his hair thickens.   This has been horribly

stressful!

Thanks again,

Kathy, mom to 20 months, treating plagio for 8 months

L R wrote:

 

Kathy,

 

I don't know if you've read my post where I posted Maysa's

latest report, but I'll add that the orthotist probably thought that I

was a little insane for bringing Maysa in for a scan at 2 years of

age.  He told me that at that age, there was nothing he could do and I

told him that I understood, so he said, what can I do for you?  After

briefly telling him our story, I told him that I needed a post-band

scan just for me, and he agreed to that. 

 

He said that she looked perfectly fine and that there was

no visual asymmetry that he could detect.  He even said that she had a

nice curve coming up from the base of her neck.  He didn't think that

her head looked obviously wide and said that her ears will keep moving

back in place in time.  He said all that before he scanned her.  The

scans basically confirmed what I have been seeing and it was nice to

see that the CI that I had estimated just 5 days prior to the scan was

exactly the same as what it is at Level 3: 88.4%...

 

At her 2 year check up, Maysa was above the 95th

percentile for both head and weight and around the 90th for height.  I

don't see her slowing down any time soon...

 

How is doing at this point?

 

Leila,

Maysa, 2 yo, DOC band Grad 5.26.09

www.mymaysa.wordpress.com

 

I took Maysa for another scan

yesterday and I can't tell you how happy I've been with her latest

report.  Read more in the link below

 

http://mymaysa. wordpress. com/2010/

01/27/hello- 80s/

 

Leila,

Maysa, 2 yo. DOC band Grad 5.26.09

www.mymaysa.

wordpress. com