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Kia,

That is an excellent letter! It is so well written. I don't think you

need to change a thing!

> Hi all,

>

> I've attached a letter that I plan to send to several area

pediatricians,

> and I'd love any constructive criticism I can get from all you

experts. I'm

> hoping to inspire the pediatricians, and I'm even thinking of

keeping my

> original appointment with Cole's old ped to hand deliver the letter

and

> discuss my feelings that they let me down by not giving me the best

info and

> by treating Cole's plagio so casually.

>

> Thanks,

>

> Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)

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Wow Kia:

You really wrote a terrific letter. Let's hope now that these Drs

will take their time in reading the letter and give you suggestions

some serious thought.

What do you think about maybe adding the www.plagiocephaly.org

website address to your letter for them to check out for more info,

or Cranial Techs, Orthomerica, our group, etc???

Debbie Abby's mom DOCGrad

MI

> Hi all,

>

> I've attached a letter that I plan to send to several area

pediatricians,

> and I'd love any constructive criticism I can get from all you

experts. I'm

> hoping to inspire the pediatricians, and I'm even thinking of

keeping my

> original appointment with Cole's old ped to hand deliver the letter

and

> discuss my feelings that they let me down by not giving me the best

info and

> by treating Cole's plagio so casually.

>

> Thanks,

>

> Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)

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Hi Debbie,

That's an excellent suggestion. I'm actually writing another letter (I'm in letter writing mode lately!) aimed at parents, and I have included web sites for parents to check out in that one (I don't know why I didn't think to include those in the letter to the docs... I guess because I'm still under the misconception that they know all about plagio, when that's obviously not true). I plan to send the letter aimed at parents to the editorials in our local paper and to several parent type magazines... hopefully it will spark someone's interest and maybe provoke more coverage on it? It just drives me crazy that this problem is treated so casually and dismissed! I'll definitely add a few web addresses to the one for the docs.

Thanks for the input (and thanks to everyone for the positive feedback!).

Kia

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:13 PMPlagiocephaly Subject: Re: letter to pediatriciansWow Kia:You really wrote a terrific letter. Let's hope now that these Drs will take their time in reading the letter and give you suggestions some serious thought.What do you think about maybe adding the www.plagiocephaly.org website address to your letter for them to check out for more info, or Cranial Techs, Orthomerica, our group, etc???Debbie Abby's mom DOCGradMI> Hi all,> > I've attached a letter that I plan to send to several area pediatricians,> and I'd love any constructive criticism I can get from all you experts. I'm> hoping to inspire the pediatricians, and I'm even thinking of keeping my> original appointment with Cole's old ped to hand deliver the letter and> discuss my feelings that they let me down by not giving me the best info and> by treating Cole's plagio so casually.> > Thanks,> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)For more plagio info

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Cole is doing pretty well in his band (thanks for asking). There has definitely been more rounding, but it's never fast enough for me. He has been eating like a champ, so I'm hoping he's going to have a growth spurt and more rounding before his next appointment.

Now I just need to stay motivated to actually get these letters sent out...

Kia (mom to Cole, born 11/20/01, STARBand 06/18/02 and Zoe 10/11/99)

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:32 PMPlagiocephaly Subject: Re: letter to pediatriciansGo Kia!!!There's no holding you back now! GREAT job....GOOD for you, you'll be helping so many families & babies by doing this! Way to go!How is Cole doing in his band?Debbie Abby's mom DOCGradMI> > Hi all,> >> > I've attached a letter that I plan to send to several area> pediatricians,> > and I'd love any constructive criticism I can get from all you> experts. I'm> > hoping to inspire the pediatricians, and I'm even thinking of> keeping my> > original appointment with Cole's old ped to hand deliver the letter> and> > discuss my feelings that they let me down by not giving me the best> info and> > by treating Cole's plagio so casually.> >> > Thanks,> >> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)> > >

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Do you have any experience with tort? I would like to get your input on putting together a letter for tort as people need to be educated about that also. Plagio and tort go hand in hand and it would be nice if the docs would recognize both as a serious problem and be more open to referrals and therapy for them. The "wait and see" thinking really upsets me with some peds.

Taryn

RE: Re: letter to pediatricians

Hi Debbie,

That's an excellent suggestion. I'm actually writing another letter (I'm in letter writing mode lately!) aimed at parents, and I have included web sites for parents to check out in that one (I don't know why I didn't think to include those in the letter to the docs... I guess because I'm still under the misconception that they know all about plagio, when that's obviously not true). I plan to send the letter aimed at parents to the editorials in our local paper and to several parent type magazines... hopefully it will spark someone's interest and maybe provoke more coverage on it? It just drives me crazy that this problem is treated so casually and dismissed! I'll definitely add a few web addresses to the one for the docs.

Thanks for the input (and thanks to everyone for the positive feedback!).

Kia

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:13 PMPlagiocephaly Subject: Re: letter to pediatriciansWow Kia:You really wrote a terrific letter. Let's hope now that these Drs will take their time in reading the letter and give you suggestions some serious thought.What do you think about maybe adding the www.plagiocephaly.org website address to your letter for them to check out for more info, or Cranial Techs, Orthomerica, our group, etc???Debbie Abby's mom DOCGradMI> Hi all,> > I've attached a letter that I plan to send to several area pediatricians,> and I'd love any constructive criticism I can get from all you experts. I'm> hoping to inspire the pediatricians, and I'm even thinking of keeping my> original appointment with Cole's old ped to hand deliver the letter and> discuss my feelings that they let me down by not giving me the best info and> by treating Cole's plagio so casually.> > Thanks,> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)For more plagio info

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Taryn,

My son Cole is a brachy baby. I don't have any experience with tort, but it sounds extremely frustrating... especially when it is not addressed by the docs. I'm sure there are many others who could give you great tort input ( comes to mind as the tort expert, but maybe I'm getting names confused?) for a letter. My original version of the letter to peds didn't even mention tort, but I knew how important it was from hearing stories here so I modified it to at least mention it. I agree that tort is something the peds should be doing a better job with diagnosing and treating. The "wait and see" thinking is a real kicker with both tort and plagio. I just don't get that attitude!

In my letter to parents (which I'll be sending out for input soon... it's still in rough draft form), I do talk about risk factors for plagio and mention tort as one of them. Perhaps I should add a paragraph to the ped's letter talking about paying special attention to alerting parents who have infants at risk for plagio and doing screenings for tort?

Kia

-----Original Message-----From: Taryn Schilling [mailto:devynskye1@...]Sent: Wednesday, August 14, 2002 10:04 PMPlagiocephaly Subject: Re: Re: letter to pediatricians

Do you have any experience with tort? I would like to get your input on putting together a letter for tort as people need to be educated about that also. Plagio and tort go hand in hand and it would be nice if the docs would recognize both as a serious problem and be more open to referrals and therapy for them. The "wait and see" thinking really upsets me with some peds.

Taryn

RE: Re: letter to pediatricians

Hi Debbie,

That's an excellent suggestion. I'm actually writing another letter (I'm in letter writing mode lately!) aimed at parents, and I have included web sites for parents to check out in that one (I don't know why I didn't think to include those in the letter to the docs... I guess because I'm still under the misconception that they know all about plagio, when that's obviously not true). I plan to send the letter aimed at parents to the editorials in our local paper and to several parent type magazines... hopefully it will spark someone's interest and maybe provoke more coverage on it? It just drives me crazy that this problem is treated so casually and dismissed! I'll definitely add a few web addresses to the one for the docs.

Thanks for the input (and thanks to everyone for the positive feedback!).

Kia

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:13 PMPlagiocephaly Subject: Re: letter to pediatriciansWow Kia:You really wrote a terrific letter. Let's hope now that these Drs will take their time in reading the letter and give you suggestions some serious thought.What do you think about maybe adding the www.plagiocephaly.org website address to your letter for them to check out for more info, or Cranial Techs, Orthomerica, our group, etc???Debbie Abby's mom DOCGradMI> Hi all,> > I've attached a letter that I plan to send to several area pediatricians,> and I'd love any constructive criticism I can get from all you experts. I'm> hoping to inspire the pediatricians, and I'm even thinking of keeping my> original appointment with Cole's old ped to hand deliver the letter and> discuss my feelings that they let me down by not giving me the best info and> by treating Cole's plagio so casually.> > Thanks,> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)For more plagio info

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It is an extremely frustrating entity. Our original ped dx at her four month visit but left the following week. The new ped we went to see was acting like I was stupid for wanting to get therapy because, as usual, "it will go away in a few months on its own". I refuse to believe that seeing the 1000s of families afflicted with this disease and I am not going to settle for less when it comes to my daughter. If we all did that we wouldn't be here and our children would be suffering because of it. Bravo to everyone on this list for not listening and following their instincts to get help for their little ones. I belong to the tort list also and am going to bring it up on there. You have definitely inspired me!!! That sounds good to me about adding something about tort....could you resend a copy of the letter to my email (devynskye1@...)? Would you mind if I shared it with the tort list so we can devise something about tort to distribute? Any help would be greatly appreciated.

Taryn

RE: Re: letter to pediatricians

Hi Debbie,

That's an excellent suggestion. I'm actually writing another letter (I'm in letter writing mode lately!) aimed at parents, and I have included web sites for parents to check out in that one (I don't know why I didn't think to include those in the letter to the docs... I guess because I'm still under the misconception that they know all about plagio, when that's obviously not true). I plan to send the letter aimed at parents to the editorials in our local paper and to several parent type magazines... hopefully it will spark someone's interest and maybe provoke more coverage on it? It just drives me crazy that this problem is treated so casually and dismissed! I'll definitely add a few web addresses to the one for the docs.

Thanks for the input (and thanks to everyone for the positive feedback!).

Kia

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:13 PMPlagiocephaly Subject: Re: letter to pediatriciansWow Kia:You really wrote a terrific letter. Let's hope now that these Drs will take their time in reading the letter and give you suggestions some serious thought.What do you think about maybe adding the www.plagiocephaly.org website address to your letter for them to check out for more info, or Cranial Techs, Orthomerica, our group, etc???Debbie Abby's mom DOCGradMI> Hi all,> > I've attached a letter that I plan to send to several area pediatricians,> and I'd love any constructive criticism I can get from all you experts. I'm> hoping to inspire the pediatricians, and I'm even thinking of keeping my> original appointment with Cole's old ped to hand deliver the letter and> discuss my feelings that they let me down by not giving me the best info and> by treating Cole's plagio so casually.> > Thanks,> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)For more plagio info

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In a message dated 8/14/2002 10:18:29 PM Eastern Daylight Time, kia@... writes:

I'm sure there are many others who could give you great tort input ( comes to mind as the tort expert, but maybe I'm getting names confused?) for a letter.

I'm certainly no expert here- I'm just like all you tort moms out there that have/are trying to figure out what to do next! Including tort in your letter is awesome, because many tort babies end up with plagio, and it really is a shame because my ped never mentioned this to me in the least when was dx at 2months- but we did try to reposition on our own regardless as I know a friend with a severe brachy baby- some are not fortunate to have known to do this and months are lost to repositioning when it can be an effective tool. Tort can be very complex to dx, in many cases, most Doctors are looking for a lump- which usually does not appear until approx. 4 weeks- and some tort kids never get the lump. In our case, our lump was of a different kind, it was really a hematoma, much larger than most lumps. Also, because they are not sitting up, the posture is harder to spot. My son looked totally normal at birth regarding tort, mostly because he was laying down or being held, and neck muscles are not as developed (even though I remember in the hospital he pulled his head off me and looked up!), and his lump didn't show up until he was a month old. In hindsight, they certainly could have detected some degree of plagio with his squished face, but many Docs blow this off as just a temporary problem from the time spent in the birth canal. I would say by the 2 month check up, it is imperative that Doctors check ROM, and asymmetry, because this was our tell-tale sign that something was wrong. I think a total education is needed, because tort can be so complex- sometimes it switches sides in kids (rare- I think called bilateral?), sometimes kids can have full ROM but have a tilt, or have no ROM, and no tilt, or have both, no ROM and have a tilt. So the factors may be very different for each kid- but for sure by 2 months, a dx can be made, and even sooner if the signs are there. The fact that some tort is developed due to hospital staff encouraging new moms to sleep their kids only on one side is just flat wrong. That is something that can really be worked on in hospitals to prevent that type of tort from happening. The tort caused by intrauterine constraint, I feel can also be somewhat curtailed as far as severity, for instance, had I been induced because they felt he was too large on my due date instead of waiting a week, or even a week before my date, perhaps he would not have been as "stuck" since he had more time to grow. Talking with the tort group is an excellent idea, they are very knowledgeable and I owe a lot to them regarding information and tips- so therein lies your pot of gold- especially if you can talk with Lori or Dee- they have seen it all probably over the past 4 years or so. Good luck to you and if you think I can help in anyway, please let me know. Also, check out the book by Karmel-Ross called "Torticollis: Differential Diagnosis and Treatment"- its a great source of information and even shows exercises (as well as facial asymmetry related to tort and plagio)- you can even order this online through and Noble. There is no question that pediatricians, new parents, and even OB/GYN's need to be more aware of both tort and plagio, and stop turning a blind eye to all of us parents that have had to figure this all out and decide for ourselves what course of treatment is or is not working- your letter will certainly start working on making that happen. You have inspired me to write my own letters- I held off because I did not want to place blame, but as educating them is the goal, I will start working on my own circle of Docs too (my ped has already gotten my earful though!)

Good luck!

' Mom

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Taryn,

Sorry I haven't responded about the letter... I'm working on a deadline tonight (we have a big build for work tomorrow, so life is a little hectic right now. Gotta get those bug fixes in!). I will definitely send out the latest version of the letters when I get a chance to finish the changes. Anyone who is interested in using the letters in whole or in part is more than welcome to do so. I'll try to get them out soon...

Kia

-----Original Message-----From: Taryn Schilling [mailto:devynskye1@...]Sent: Wednesday, August 14, 2002 10:21 PMPlagiocephaly Subject: Re: Re: letter to pediatricians

It is an extremely frustrating entity. Our original ped dx at her four month visit but left the following week. The new ped we went to see was acting like I was stupid for wanting to get therapy because, as usual, "it will go away in a few months on its own". I refuse to believe that seeing the 1000s of families afflicted with this disease and I am not going to settle for less when it comes to my daughter. If we all did that we wouldn't be here and our children would be suffering because of it. Bravo to everyone on this list for not listening and following their instincts to get help for their little ones. I belong to the tort list also and am going to bring it up on there. You have definitely inspired me!!! That sounds good to me about adding something about tort....could you resend a copy of the letter to my email (devynskye1@...)? Would you mind if I shared it with the tort list so we can devise something about tort to distribute? Any help would be greatly appreciated.

Taryn

RE: Re: letter to pediatricians

Hi Debbie,

That's an excellent suggestion. I'm actually writing another letter (I'm in letter writing mode lately!) aimed at parents, and I have included web sites for parents to check out in that one (I don't know why I didn't think to include those in the letter to the docs... I guess because I'm still under the misconception that they know all about plagio, when that's obviously not true). I plan to send the letter aimed at parents to the editorials in our local paper and to several parent type magazines... hopefully it will spark someone's interest and maybe provoke more coverage on it? It just drives me crazy that this problem is treated so casually and dismissed! I'll definitely add a few web addresses to the one for the docs.

Thanks for the input (and thanks to everyone for the positive feedback!).

Kia

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:13 PMPlagiocephaly Subject: Re: letter to pediatriciansWow Kia:You really wrote a terrific letter. Let's hope now that these Drs will take their time in reading the letter and give you suggestions some serious thought.What do you think about maybe adding the www.plagiocephaly.org website address to your letter for them to check out for more info, or Cranial Techs, Orthomerica, our group, etc???Debbie Abby's mom DOCGradMI> Hi all,> > I've attached a letter that I plan to send to several area pediatricians,> and I'd love any constructive criticism I can get from all you experts. I'm> hoping to inspire the pediatricians, and I'm even thinking of keeping my> original appointment with Cole's old ped to hand deliver the letter and> discuss my feelings that they let me down by not giving me the best info and> by treating Cole's plagio so casually.> > Thanks,> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)For more plagio info

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All I ask is that you change the return address and the signature... lol :)

I have to confess that writing was never my strong suit (part of the reason I went into computer science... but I found out later I still had to write papers. What a cruel trick). But plagio is definitely a subject that I feel strongly about and have done lots of reading on (now), so I was hoping that the letter would reflect that. Thanks for the positive feedback. Let's just hope it helps some parent get better information from their doc in the future!

Kia

-----Original Message-----From: stripes6060 [mailto:taime@...]Sent: Thursday, August 15, 2002 10:31 PMPlagiocephaly Subject: Re: letter to pediatriciansHi Kia,I'm so glad you offered, b/c I was going to ask you if it was ok, to use your letter!! You really did a great job! Thanks,> > Hi all,> >> > I've attached a letter that I plan to send to several area> pediatricians,> > and I'd love any constructive criticism I can get from all you> experts. I'm> > hoping to inspire the pediatricians, and I'm even thinking of> keeping my> > original appointment with Cole's old ped to hand deliver the> letter> and> > discuss my feelings that they let me down by not giving me the> best> info and> > by treating Cole's plagio so casually.> >> > Thanks,> >> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)> > > > For more plagio info

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Kia,

Great letter. I second Debbie's idea and suggest that you also list

www.cappskids.org as well.

I'm not sure what repositioning info you attached, but it might be

nice to add a line or two in the text about repositioning. My

pediatrician recommended tummy time when I pointed out my daughter's

head shape at 2 months old. Never said anything about trying to keep

her off the flat spot during sleeping. I'm convinced that if I had

been told to try keeping her off the flat spot 24/7, we could have

avoided banding all together. The head turning I was doing just

wasn't enough; should have been alternating side sleeping.

Another thought. Maybe change the referral to a pediatrician from 5

months to 4 months, since that is the time at which most pediatricians

see babies for their well visits. Some even suggest referral out at

2 months -- to catch possible cranio and get good (hopefully)

repositioning info.

Thanks so much for a great letter. I've been meaning to do the same

for the past year. You've given me the impetus to get going on it.

-

> > Hi all,

> >

> > I've attached a letter that I plan to send to several area

> pediatricians,

> > and I'd love any constructive criticism I can get from all you

> experts. I'm

> > hoping to inspire the pediatricians, and I'm even thinking of

> keeping my

> > original appointment with Cole's old ped to hand deliver the

letter

> and

> > discuss my feelings that they let me down by not giving me the

best

> info and

> > by treating Cole's plagio so casually.

> >

> > Thanks,

> >

> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)

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Thanks for allowing me to use it. I won't let your efforts go unnoticed either. I won't take credit where credit is due. You did a wonderful job and should be patting yourself on the back.

Taryn

RE: Re: letter to pediatricians

Hi Debbie,

That's an excellent suggestion. I'm actually writing another letter (I'm in letter writing mode lately!) aimed at parents, and I have included web sites for parents to check out in that one (I don't know why I didn't think to include those in the letter to the docs... I guess because I'm still under the misconception that they know all about plagio, when that's obviously not true). I plan to send the letter aimed at parents to the editorials in our local paper and to several parent type magazines... hopefully it will spark someone's interest and maybe provoke more coverage on it? It just drives me crazy that this problem is treated so casually and dismissed! I'll definitely add a few web addresses to the one for the docs.

Thanks for the input (and thanks to everyone for the positive feedback!).

Kia

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Wednesday, August 14, 2002 9:13 PMPlagiocephaly Subject: Re: letter to pediatriciansWow Kia:You really wrote a terrific letter. Let's hope now that these Drs will take their time in reading the letter and give you suggestions some serious thought.What do you think about maybe adding the www.plagiocephaly.org website address to your letter for them to check out for more info, or Cranial Techs, Orthomerica, our group, etc???Debbie Abby's mom DOCGradMI> Hi all,> > I've attached a letter that I plan to send to several area pediatricians,> and I'd love any constructive criticism I can get from all you experts. I'm> hoping to inspire the pediatricians, and I'm even thinking of keeping my> original appointment with Cole's old ped to hand deliver the letter and> discuss my feelings that they let me down by not giving me the best info and> by treating Cole's plagio so casually.> > Thanks,> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)For more plagio info

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Writing looks like your strong suit to me!!! You worded your letter so perfectly to sound intelligent and informed. That will help getting your voice heard.

Taryn

RE: Re: letter to pediatricians

All I ask is that you change the return address and the signature... lol :)

I have to confess that writing was never my strong suit (part of the reason I went into computer science... but I found out later I still had to write papers. What a cruel trick). But plagio is definitely a subject that I feel strongly about and have done lots of reading on (now), so I was hoping that the letter would reflect that. Thanks for the positive feedback. Let's just hope it helps some parent get better information from their doc in the future!

Kia

-----Original Message-----From: stripes6060 [mailto:taime@...]Sent: Thursday, August 15, 2002 10:31 PMPlagiocephaly Subject: Re: letter to pediatriciansHi Kia,I'm so glad you offered, b/c I was going to ask you if it was ok, to use your letter!! You really did a great job! Thanks,> > Hi all,> >> > I've attached a letter that I plan to send to several area> pediatricians,> > and I'd love any constructive criticism I can get from all you> experts. I'm> > hoping to inspire the pediatricians, and I'm even thinking of> keeping my> > original appointment with Cole's old ped to hand deliver the> letter> and> > discuss my feelings that they let me down by not giving me the> best> info and> > by treating Cole's plagio so casually.> >> > Thanks,> >> > Kia (mom to Cole, born 11/20/01, STARBand 06/18/02)> > > > For more plagio info

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Kia:

That is really and honestly a terrific letter. You should be very

proud of yourself. Now we can only hope this will get thru to some

of these uneducated & arrogant Drs and specialists.

I'm sure the letter you're working on for parents will be great too.

GREAT JOB!

Debbie Abby'smom

MI

> Here is that letter I promised to send. I think I managed to

incorporate

> all the great suggestions that I got (thanks for the input). Cole

has his 9

> month checkup on Thursday, and I plan to discuss plagio with the

doctor and

> hand deliver my letter (I'm dreading this because I HATE

confrontation...

> but I really feel that it's important, especially if it helps some

parent

> and child down the line). Wish me luck!

>

> I'm still working on the letter aimed at parents (I hope to send

that one to

> the editorials and some parent magazines). For some reason, I'm

having much

> more trouble with that one. But I'll be sending it on for

suggestions when

> I have a better version.

>

> Thanks again for the input!

>

> Kia

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EXCELLENT job Kia!! I can't wait to hear how it goes on Thursday!

Good luck, you are doing a great job!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Here is that letter I promised to send. I think I managed to

incorporate

> all the great suggestions that I got (thanks for the input). Cole

has his 9

> month checkup on Thursday, and I plan to discuss plagio with the

doctor and

> hand deliver my letter (I'm dreading this because I HATE

confrontation...

> but I really feel that it's important, especially if it helps some

parent

> and child down the line). Wish me luck!

>

> I'm still working on the letter aimed at parents (I hope to send

that one to

> the editorials and some parent magazines). For some reason, I'm

having much

> more trouble with that one. But I'll be sending it on for

suggestions when

> I have a better version.

>

> Thanks again for the input!

>

> Kia

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