Update on

September 11, 2002

Hi :

Good luck when you get 's band on Friday. Let us know how it

all goes & how everyone adjusts to it.

It's hard for orthotists to know for sure how long a baby will be in

the band for or whether or not they'll need more than one band. I am

assuming 's plagio is severe so that would be why your

orthotist thought he'll need 2 bands, especially with

beginning younger, he should get fast & good correction.

You are very fortunate to not have a struggle with insurance or the

drs! That's the way it SHOULD be for everyone going thru this.

Thanks for the update. Happy decorating!

Debbie Abby's mom DOCGrad

MI

> Hello,

> I don't know if you all remember me... I am , 's mommy

> (fairly new to the board). got his scan for his STARband

> almost 2 weeks ago and we go to pick up his band on Friday! The

scan

> went well, so much better than having to go through a casting. He

> was really squirmy at first (they have to stay perfectly still for

> 1.5 seconds), but then he actually fell asleep and they were able

to

> get a perfect scan on the 3rd try. The ortho told us to be

prepared

> for 2 bands, he said he would set up a course of treatment until

> is 1 year old (he is 1 week shy of 6 months now). Is that

> unusual for him to know already that he will probably need 2

bands?

> He said we would evaluate after he was done with the first and

decide

> then whether to proceed. We were told that we have to go back for

> weekly adjustments. I asked him about decorating the band and he

> said that he doesn't recommend painting because of the risk of

> getting paint on the inside of the band that would irritate baby's

> skin. I have already bought a bunch of stickers to decorate with.

> But the best part about this whole process is that we had none of

the

> difficulties that a lot of people on this board seemed to have. We

> got the Rx for the band with no problem, and our insurance is

> covering 80%, no problem. I feel so fortunate! I am also very

> grateful to the people on this board. Because of you all, I knew

> exactly what to expect, and the whole thing was less stressfull...

> THANKS!

>

> Mom to and (plagio/tort)

> NY

October 8, 2002

,

is soooo cute. Thanks for sharing that picture. So glad to hear she is doing well in her band. You know, what is it about NASCAR and babies? My "baby" is almost 21 months old now and he's been watching NASCAR since around six to eight months. He is obsessed with cars, period, and will literally, no joke, sit in front of the tv for the whole race every Sunday. He and daddy have a blast and I get my mommy time to myself. is such a NASCAR freak, he recognizes just about anything that has to do with racing. He can spot the NASCAR logo a mile away and starts yelling, racing racing! One day in the grocery store he was pointing to beer and saying, "Racing." I couldn't figure it out, until I realized he probably recognized one of the logos from a car. Hopefully won't turn out as nutty as my kid. : )

Kellie

October 8, 2002

,

What a picture!!!! That's a keeper.

Glad to hear all is well with Little Miss . That is great that

your " following " your orthotist. I would of done the same thing.

Good luck with your insurance company. I hope it all works out for

you.

> Hi All. Just wanted to check in. It's been a while since I've

posted.

> is still roundin' away. I decided to follow her orthotist

and her

> first visit at the new office is tomorrow. I'll find out then how

they plan

> to do billing. I also got my EOB from Cigna and they didn't

process the

> claim because they wanted paperwork from the doctor and her

diagnosis etc.

> I guess that's better than an outright denial, who knows?

>

> As far as her developmental delays, she's started to improve in

some areas.

> She is now starting to sit up on her own. She can sit up without

support

> for about a minute or so before crashing (which she thinks is funny

if she's

> on the bed). She has no dip whatsoever to the left (that dip

really

> concerned me). It looks like her tort is resolved also. She has

no tilt

> and also full range of motion. I'm still waiting for her to become

mobile.

> She has just started to roll over, but has no idea that I am

waiting for her

> to crawl!! hehe She just kinda " swims " on her belly not going

anywhere.

> One of these days she may figure out that she has knees. Oh well.

>

> Overall we are doing pretty good. My husband and I continue to

have a blast

> with daily, she's such a blessing.

>

> I've attached a picture from this weekend. I walked into the

living room to

> find her looking like this, watching the Sunday Nascar race in

daddy's lap.

> He loves the fact that she likes watching the cars on tv.

>

> Hope everyone else is doing well.

>

> & (6.5 months, banded 8/26/02)

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

October 8, 2002

,

It sounds like is doing really well. I think it was a good idea to follow

the ortho who started the treatment. He is most familiar with and her

helmet.

Good luck with the insurance -hope it works out without too much hassle.

Marci (Mom to )

Oklahoma

October 8, 2002

,

I think you're right about Cigna and not getting a denial yet. We got a "canned" denial from them, then they asked for medical records to write the official denial, but it's clear that they didn't look at our records anyway. If they had looked at our records they wouldn't have written incorrect information about us, like mixing up which twin came first. I have my fingers crossed for you that Cigna has finally gotten a clue and might not give you any hassels!

That's great that is still rounding, and I love the pic of her watching the races. Good luck with the new office.

Gail, Sam and Sara's mom, DOC grads

Update on

Hi All. Just wanted to check in. It's been a while since I've posted. is still roundin' away. I decided to follow her orthotist and her first visit at the new office is tomorrow. I'll find out then how they plan to do billing. I also got my EOB from Cigna and they didn't process the claim because they wanted paperwork from the doctor and her diagnosis etc. I guess that's better than an outright denial, who knows?As far as her developmental delays, she's started to improve in some areas. She is now starting to sit up on her own. She can sit up without support for about a minute or so before crashing (which she thinks is funny if she's on the bed). She has no dip whatsoever to the left (that dip really concerned me). It looks like her tort is resolved also. She has no tilt and also full range of motion. I'm still waiting for her to become mobile. She has just started to roll over, but has no idea that I am waiting for her to crawl!! hehe She just kinda "swims" on her belly not going anywhere. One of these days she may figure out that she has knees. Oh well.Overall we are doing pretty good. My husband and I continue to have a blast with daily, she's such a blessing.I've attached a picture from this weekend. I walked into the living room to find her looking like this, watching the Sunday Nascar race in daddy's lap. He loves the fact that she likes watching the cars on tv.Hope everyone else is doing well. & (6.5 months, banded 8/26/02)_________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspxFor more plagio info

October 8, 2002

jennifer:

What a beautiful little girl! She sure is a blessing.

Sounds like everything is going great so far. It's probably the best

decision to follow her orthotist, he sounds like he really knows what

he's doing and knows her history, that's very important.

I hope Cigna will come thru once you get them their requested

paperwork. It is better than an outright denial.

I'm sure will catch up soon with her delays. Very soon you'll

be saying " won't this kid ever sit still??? " as you have chased her

around the house for hours & hours & hours & hours & hours & hours.

LOL.

Hope things continue going so well, keep us updated.

Debbie Abby's mom DOCGrad

MI

> Hi All. Just wanted to check in. It's been a while since I've

posted.

> is still roundin' away. I decided to follow her orthotist

and her

> first visit at the new office is tomorrow. I'll find out then how

they plan

> to do billing. I also got my EOB from Cigna and they didn't

process the

> claim because they wanted paperwork from the doctor and her

diagnosis etc.

> I guess that's better than an outright denial, who knows?

>

> As far as her developmental delays, she's started to improve in

some areas.

> She is now starting to sit up on her own. She can sit up without

support

> for about a minute or so before crashing (which she thinks is funny

if she's

> on the bed). She has no dip whatsoever to the left (that dip

really

> concerned me). It looks like her tort is resolved also. She has

no tilt

> and also full range of motion. I'm still waiting for her to become

mobile.

> She has just started to roll over, but has no idea that I am

waiting for her

> to crawl!! hehe She just kinda " swims " on her belly not going

anywhere.

> One of these days she may figure out that she has knees. Oh well.

>

> Overall we are doing pretty good. My husband and I continue to

have a blast

> with daily, she's such a blessing.

>

> I've attached a picture from this weekend. I walked into the

living room to

> find her looking like this, watching the Sunday Nascar race in

daddy's lap.

> He loves the fact that she likes watching the cars on tv.

>

> Hope everyone else is doing well.

>

> & (6.5 months, banded 8/26/02)

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

October 8, 2002

its great to hear such wonderful news..glad to hear she is still rounding away..what a cute picture..ty likes it to when tucker watches tv with him...only he watches history stuff and all that stuff..who knows..maybe he'll be a history major or something!!!..keep up the great work and keep us posted...

-- Update on

Hi All. Just wanted to check in. It's been a while since I've posted. is still roundin' away. I decided to follow her orthotist and her first visit at the new office is tomorrow. I'll find out then how they plan to do billing. I also got my EOB from Cigna and they didn't process the claim because they wanted paperwork from the doctor and her diagnosis etc. I guess that's better than an outright denial, who knows?As far as her developmental delays, she's started to improve in some areas. She is now starting to sit up on her own. She can sit up without support for about a minute or so before crashing (which she thinks is funny if she's on the bed). She has no dip whatsoever to the left (that dip really concerned me). It looks like her tort is resolved also. She has no tilt and also full range of motion. I'm still waiting for her to become mobile. She has just started to roll over, but has no idea that I am waiting for her to crawl!! hehe She just kinda "swims" on her belly not going anywhere. One of these days she may figure out that she has knees. Oh well.Overall we are doing pretty good. My husband and I continue to have a blast with daily, she's such a blessing.I've attached a picture from this weekend. I walked into the living room to find her looking like this, watching the Sunday Nascar race in daddy's lap. He loves the fact that she likes watching the cars on tv.Hope everyone else is doing well. & (6.5 months, banded 8/26/02)_________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspxFor more plagio info

October 12, 2002

:

Thanks for the update. I bet will do just fine sleeping with

his new band, he seems to be doing well while awake

My daughter whose plagio was severe, didn't receive her DOCband til

age 11.5 mos. She wore one band for 4.5 mos & rec'd 50-60%

correction, which I am thrilled with.

Hopefully will hit a couple good growth spurts in the next

mos to help correct his head shape.

Good luck, keep us posted.

Debbie Abby' smom DOCGrad

MI

> Hi everyone,

> Sorry I haven't posted in a while but I've been busy trying to get

my

> son situated. We had been waiting for his Starband to come

> in and it finally did on Wednesday, October 9th. We went in to get

> it fitted and despite a little bit of protest, did great.

> Once he had it on his head for a few minutes, he acted like he

didn't

> even notice that it was on. We are now slowly getting him used to

> having it on, today it was 4 hours, yesterday 2 hours, etc. He

seems

> to be doing well with it so far but we haven't tried him sleeping

in

> it yet. Hope that wont be too difficult. He is now 13 months old

> and I was wondering if anybody else had their kids banded late,

like

> my son, and have gotten any good results. s case wasn't too

> severe, he was in the moderate range, but we are hoping that the

> Starband will provide good results for him. Hope everyone else is

> doing well.

> and

> Tucson, AZ

October 13, 2002

Hey I am so glad things are going well and continue ues to

adjust. Keep us posted whenever you have time and some pictures too of

course:-) We have a lot of late banded babies success stories.

beck

October 14, 2002

,

Sounds like is doing great. We have a lot of parents here whose children

started " late " . Hopefully you will get some good responses from them.

Keep us posted!

Marci (Mom to )

Oklahoma

November 6, 2002

Hi ,

It is totally possible for a baby to wear both a band and glasses at

the same time. There is a picture on the CT site (in the calendar) of

a little cutie in a band and glasses. We also have a member here,

Aimee, whose son Dakota wears a band and glasses. I know in the

beginning they had a hard time with it, but eventually they did get

it.

Woo Hoo ! Keep growing.

> Hi everyone!

> It's been a while since I've posted and I thought I would let you

all

> know about the new developments with (7 1/2 months). He

has

> been in his STARband for almost 8 weeks now and we are seeing some

> great rounding in the back. He still has a way to go for the front

> though.

>

> Since birth he has had a " droopy " left eyelid, possibly related to

> the plagio. His ped suggested we get it checked out by a pediatric

> eye dr. just to be sure that his vision is not affected. So off we

> went a couple of weeks ago to the eye dr. I was expecting him to

> say " Nothing to worry about " and send us on our way. I was so

> wrong. He said that the droopy eyelid was not anything to worry

> about but that is extremely nearsighted with astigmatism in

> both eyes and he needs GLASSES! I can't imagine my sweet little

boy

> in a helmet and glasses! I knew he would need glasses someday,

since

> both myself and my husband wear them, but I didn't expect it this

> soon!! He said that kids with craniofacial problems are more

likely

> to need glasses, so it is probably related to the plagio.

>

> Because of this board I thought to ask how we would deal with

glasses

> and a helmet (It would have never occurred to me to ask that right

> away). The eye dr. said we could wait 3 months to see if he is out

> of his helmet and then get the glasses for him. His ortho said

that

> he has never dealt with glasses and the band, but we would deal

with

> it if that needed to happen. I think I may call the eye Dr. back

and

> get the glasses sooner, since the ortho is so willing to deal with

it

> and the eye Dr. said that if we don't get him in glasses soon he

> could suffer some permanent loss of vision.

>

> In a way I am thankful that if it weren't for his plagio and his

> droopy eye, we would have never known about this and 's

> eyesight may have suffered in the long run. We go on Friday for

his

> regular adjustment and then Nov. 19th back to the plastic surgeon

for

> an evaluation.

>

> Sorry this has gotten long. I know that glasses are not the end of

> the world, but I still have to get used to the idea.

>

> Thanks for " listening " !

> ,

> Mom to and (STARband and future wearer of glasses!)

November 6, 2002

,

Wow, what an ordeal. I'm so glad that you found out sooner

rather then later. What a great ortho for being so willing to work

with you on this. I have heard of at least two other moms here

whose babies had to wear glasses and helmets. One had good

luck with her ortho the other not so good. I hope you will let us

know how the glasses and helmet work together - that will surely

help other parents down the line.

Keep us posted.

Marci (Mom to )

Oklahoma

> Hi everyone!

> It's been a while since I've posted and I thought I would let you

all

> know about the new developments with (7 1/2

months). He has

> been in his STARband for almost 8 weeks now and we are

seeing some

> great rounding in the back. He still has a way to go for the front

> though.

>

> Since birth he has had a " droopy " left eyelid, possibly related to

> the plagio. His ped suggested we get it checked out by a

pediatric

> eye dr. just to be sure that his vision is not affected. So off we

> went a couple of weeks ago to the eye dr. I was expecting him

to

> say " Nothing to worry about " and send us on our way. I was so

> wrong. He said that the droopy eyelid was not anything to

worry

> about but that is extremely nearsighted with

astigmatism in

> both eyes and he needs GLASSES! I can't imagine my sweet

little boy

> in a helmet and glasses! I knew he would need glasses

someday, since

> both myself and my husband wear them, but I didn't expect it

this

> soon!! He said that kids with craniofacial problems are more

likely

> to need glasses, so it is probably related to the plagio.

>

> Because of this board I thought to ask how we would deal with

glasses

> and a helmet (It would have never occurred to me to ask that

right

> away). The eye dr. said we could wait 3 months to see if he is

out

> of his helmet and then get the glasses for him. His ortho said

that

> he has never dealt with glasses and the band, but we would

deal with

> it if that needed to happen. I think I may call the eye Dr. back

and

> get the glasses sooner, since the ortho is so willing to deal

with it

> and the eye Dr. said that if we don't get him in glasses soon he

> could suffer some permanent loss of vision.

>

> In a way I am thankful that if it weren't for his plagio and his

> droopy eye, we would have never known about this and

's

> eyesight may have suffered in the long run. We go on Friday

for his

> regular adjustment and then Nov. 19th back to the plastic

surgeon for

> an evaluation.

>

> Sorry this has gotten long. I know that glasses are not the end

of

> the world, but I still have to get used to the idea.

>

> Thanks for " listening " !

> ,

> Mom to and (STARband and future wearer of

glasses!)

November 7, 2002

,

I know you've already gotten great responses and links for banded beauties in glasses, so I just wanted to shout out a big "woo-hoo" for the results your seeing with the STARband! YEAH! Hope to read more good news soon! Good luck with the glasses and post a pic, he'll surely be super cuter!

' Mom

November 11, 2002

Hi Joanne:

It sounds like 's tort is close to being fully resolved!

YAY. I've heard of tort. children still tilting when they are tired,

or stressed - which it suonds like nicholas is still doing.

What type of band is wearing? Many children still get good

results while banded, even after age one. My daughter didn't begin

her DOCband til she was 11.5 mos old, she had severe plagio & we were

able to get 50-60% correction, which i'm thrilled with.

I'd say the decision is yours whether or not to get him a 2nd band.

Hopefully he'll hit a good growth spurt before he outgrows his

current band and that'll correct any remaining flatness and

assymetries.

I hope he won't be needing surgery for his hydronephrosis, definitely

will keep him in my prayers.

Happy early 1st birthday!! Big party planned?

Debbie Abby's mom DOCGrad

MI

> Hi All,

>

> I have been having some trouble with my email lately due to

switching servers, so when I replied to posts they were returned.

Hopefully, it is sorted out now!

>

> turns one on the 16th. He has been discharged from physio

eventhough he isn't walking yet! We don't see a head tilt unless he

is tired or teething. His head shape has greatly improved! He has

been in a band for 4.5 months and still has room for growth. I asked

about a second band due to his ears still being slightly off, but was

told it wouldn't due much good...what are your experiences with bands

after age one?

>

> He was also born with hydronephrosis(enlarged kidney). It may

require surgery or it may not...we find out in December.

>

> Take care,

> Joanne &

> BC, Canada

November 14, 2002

Joanne,

Thanks for the great update! I have heard great things about seeing improvement after age 1, the correction may be slow going, but I have heard people say they have seen correction and it was worth the effort that many Docs say is not. In case I forget:

Happy 1st Birthday !!!!

&

December 2, 2002

Brock,

Wow, that sounds fantastic!

Your son may have some motor planning difficulties that affect his ability to

sign, but as you have only started, stick with it. It can definitely decrease

frustration. Repitition is key! If you can just pick one or 2 to work on, and

have EVERYONE in the family do it with him, that seems to help. My son seems to

pay attention the most when we are all sitting around the dinner table--no other

distractions.

[ ] Update on

, 2.5-verbal & oral apraxia, has been on ProEFA

for almost 3 weeks now. We started him on 1x a day for

2 weeks then just four days ago, I started him 2x's a

day. We have definately seen & heard a big difference

in his speech. Before proefa, he only said Moma,

Daddy(leaving out the 2 middle d's, not sure if it is

from being cajun or due to apraxia!!)oh man & damn

it(not sure where he got that from!!!)

Now after being on proefa, he has said " oh my gosh " ,

when playing with a puzzle, he put two pieces on it

and said, " one, two " . He also tells the baby " no-no "

ALL OF THE TIME. My oldest son said that he said

something last night that was amazing, but he couldn't

remember this morning what it was. I know that he

probably want say these things again for a long time,

but they sure did make my heart swell with joy.

I've been trying to sign with him, but he doesn't get

it. He just stares at me. But I will keep on trying.

Most of the tantrums have subsided a little. He still

gets upset when the older boys bother him, or when a

toy will not cooperate!! I have just been removing him

from the situation and that seems to have helped.

Another amizing thing that he did the other day was

waving good bye. He has never done that before. Which

makes me wonder if he isn't limb apraxic also.

Enough of my babbling, my prayers are with each one of

you and your children.

Brock, mom of Nik-10(cancer survivor), Denver-8,

-2.5 apraxic, Kobe-11 months

December 2, 2002

brock

you could be describing my son. says no to his younger brother all the time

when he gets into his toys, loves puzzles, hardly any words, and has just

started waving. the preschool he is in said to help him wave hold the arm up

and grasp the wrist, not hard. this will help him isolate the muscles used

for waving. do it on yourself and you can feel how easy it makes it to wave.

at 3 we're finally learning to wave. his 8 month old brother is doing alittle

waving himself and saying ba-ba and ma-ma. which my older son gets mad when

he talks. are any other parent's children annoyed at younger siblings trying

to talk? how do we deal with that? i know they will probably learn together,

even though they are 2 1/2 years apart.

lori

December 3, 2002

Its not really being annoyed its the fact that you have a older siblings trying

the same words out that the younger sibling has already mastered. I recall being

upset and worried all in a shot. and jacob are 18 months apart. Alot of

people would ask me how I felt that mastered this or mastered that and

doesn't this bother you. Yes it bothered me cause I was so worried for and

knew soon enough he would notice it himself and be hurt. Alot of emotions fly

threw when you notice these things. I remember when was in 1st grade and

in preschool when a teacher pointed out how well joshua talked......and

jacob looked so upset over this......i wanted to wring this teachers head.

Diane, mom to ,,,,, and ph (coming in February)

Owner to Missingmom,boyohboy, list

name dianejs,AIM name CoolDi5

Re: [ ] Update on