feeling discouraged today..

[Guest guest]

I called CT in ndale, talked to Lina and made a consultation for next

Wednesday. YAY! I was so excited after we got off the phone. They were planning

on doing his mold after the consultation,to avoid another trip for us, since we

know we want to procede with treatment.

But, later, I got a call from Amber who was the clinician I talked to yesterday

(that one that actually made me feel there was hope! yesterday

She said she needed more information, and asked me to email pictures of my son,

so she can see his head and everything. But, then she said,

I am more than happy to see for consultation, but I do want to make sure

you are aware that after evaluating him in person and taking all of his medical

history into account I may not recommend treatment depending on my findings. I

realize this would be a huge commitment for both and your entire family

and I want to be fair in my recommendation and expected outcomes.

I immediately felt discouraged! I don't think it is fair that kids with special

needs be treated like their appearances don't matter. I am not saying that how

she feels, but it just made me feel that way. To my knowledge, there is no

medical reason he couldn't be banded.

Maybe I'm reading too much into it. But then, maybe I'm kidding myself - to a

lot of people, my son is intimidating...but what people fail to realize - his

issues are temporary! His cleft palate will be fixed someday! His lip will heal

more and be less noticeable! The trach will be removed someday! So when the

rest of him is fixed up, why cant he have the chance at a nice head to go with

it?...

It just made me feel that because he was born with birth defects, that they will

be against helping him

And I'm just really feeling like that is what I am going to hear next week -

that they're sorry they can't help us

If everyone could send some positive thoughts and prayers my way next week, I'd

appreciate it!

thanks!

[Guest guest]

I am so sorry you feel that way. Your son deserves the best. I know he will get it with you as his mother. I am sending prayers and good thoughts your way.

Angie

feeling discouraged today..

I called CT in ndale, talked to Lina and made a consultation for next Wednesday. YAY! I was so excited after we got off the phone. They were planning on doing his mold after the consultation,to avoid another trip for us, since we know we want to procede with treatment.But, later, I got a call from Amber who was the clinician I talked to yesterday (that one that actually made me feel there was hope! yesterday :)She said she needed more information, and asked me to email pictures of my son, so she can see his head and everything. But, then she said, I am more than happy to see for consultation, but I do want to make sure you are aware that after evaluating him in person and taking all of his medical history into account I may not recommend treatment depending on my findings. I realize this would be a huge commitment for both and your entire family and I want to be fair in my recommendation and expected outcomes.I immediately felt discouraged! I don't think it is fair that kids with special needs be treated like their appearances don't matter. I am not saying that how she feels, but it just made me feel that way. To my knowledge, there is no medical reason he couldn't be banded.Maybe I'm reading too much into it. But then, maybe I'm kidding myself - to a lot of people, my son is intimidating...but what people fail to realize - his issues are temporary! His cleft palate will be fixed someday! His lip will heal more and be less noticeable! The trach will be removed someday! So when the rest of him is fixed up, why cant he have the chance at a nice head to go with it?...It just made me feel that because he was born with birth defects, that they will be against helping him :(And I'm just really feeling like that is what I am going to hear next week - that they're sorry they can't help us :(If everyone could send some positive thoughts and prayers my way next week, I'd appreciate it! :)thanks!

[Guest guest]

I'm sorry you're feeling discouraged. I definitely don't think they will deny

banding him simply because they feel his appearance doesn't matter due to his

special needs. I just think they will need to see him in person and get a full

history to see if a band will benefit him. A cleft palate does not effect how

the band works, nor does a trach tube. However, is he growing at a normal rate?

That is KEY to successful treatment. I think she was just covering her bases for

now, and she's right, it is a big commitment for you with the travel and

everything. Plus she might make similar calls to other parents that schedule the

scan for right after, to be sure they realize that just because they have the

appointment, doesn't mean that treatment is guaranteed. I'm sure she just wanted

to prepare you a little so that you have realistic expectations going into the

consult. I really hope it all works out for you though! Try to stay positive!

Good luck! Please let us know how the consult goes next week.

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> I called CT in ndale, talked to Lina and made a consultation for next

Wednesday. YAY! I was so excited after we got off the phone. They were planning

on doing his mold after the consultation,to avoid another trip for us, since we

know we want to procede with treatment.

>

> But, later, I got a call from Amber who was the clinician I talked to

yesterday (that one that actually made me feel there was hope! yesterday

>

> She said she needed more information, and asked me to email pictures of my

son, so she can see his head and everything. But, then she said,

>

> I am more than happy to see for consultation, but I do want to make sure

you are aware that after evaluating him in person and taking all of his medical

history into account I may not recommend treatment depending on my findings. I

realize this would be a huge commitment for both and your entire family

and I want to be fair in my recommendation and expected outcomes.

>

> I immediately felt discouraged! I don't think it is fair that kids with

special needs be treated like their appearances don't matter. I am not saying

that how she feels, but it just made me feel that way. To my knowledge, there is

no medical reason he couldn't be banded.

>

> Maybe I'm reading too much into it. But then, maybe I'm kidding myself - to a

lot of people, my son is intimidating...but what people fail to realize - his

issues are temporary! His cleft palate will be fixed someday! His lip will heal

more and be less noticeable! The trach will be removed someday! So when the

rest of him is fixed up, why cant he have the chance at a nice head to go with

it?...

>

> It just made me feel that because he was born with birth defects, that they

will be against helping him

>

> And I'm just really feeling like that is what I am going to hear next week -

that they're sorry they can't help us

>

> If everyone could send some positive thoughts and prayers my way next week,

I'd appreciate it!

>

> thanks!

>

[Guest guest]

I think that's a common disclaimer and I wouldn't take offense until you have all the facts.  As an example when looking at plagio an assymetry of 3mm or less is considered normal, but they don't generally recommend banding until the assymetry is >10mm.  There's a definite gray area there and some people do go forward with banding with an assymetry just under 10mm and others don't.  

Elaine (twin A) plagio & tort, 11mos, 2nd helmet since 1/5/09On Tue, Apr 21, 2009 at 7:02 PM, michaelann32 <michaelann32@...> wrote:

I called CT in ndale, talked to Lina and made a consultation for next Wednesday. YAY! I was so excited after we got off the phone. They were planning on doing his mold after the consultation,to avoid another trip for us, since we know we want to procede with treatment.

But, later, I got a call from Amber who was the clinician I talked to yesterday (that one that actually made me feel there was hope! yesterday

She said she needed more information, and asked me to email pictures of my son, so she can see his head and everything. But, then she said,

I am more than happy to see for consultation, but I do want to make sure you are aware that after evaluating him in person and taking all of his medical history into account I may not recommend treatment depending on my findings. I realize this would be a huge commitment for both and your entire family and I want to be fair in my recommendation and expected outcomes.

I immediately felt discouraged! I don't think it is fair that kids with special needs be treated like their appearances don't matter. I am not saying that how she feels, but it just made me feel that way. To my knowledge, there is no medical reason he couldn't be banded.

Maybe I'm reading too much into it. But then, maybe I'm kidding myself - to a lot of people, my son is intimidating...but what people fail to realize - his issues are temporary! His cleft palate will be fixed someday! His lip will heal more and be less noticeable! The trach will be removed someday! So when the rest of him is fixed up, why cant he have the chance at a nice head to go with it?...

It just made me feel that because he was born with birth defects, that they will be against helping him

And I'm just really feeling like that is what I am going to hear next week - that they're sorry they can't help us

If everyone could send some positive thoughts and prayers my way next week, I'd appreciate it!

thanks!

[Guest guest]

You are all right. Thank you!

I am usually very positive, however I'm finding it a little hard to be with all

the hurdles we have to cross!

And, looking at it with a clearer head, I'm sure you are right, its more of a

general statement. And I'm trying not to get my hopes up, so maybe it was a good

statement to make.

And with his history, most people do expect to see a small, thin, failure to

thrive looking baby, but he is NOT that. He looks more like the Michelin man

He is still growing well, so that is on our side I do believe!

thanks everyone, and I'll keep you posted!

>

> >

> >

> > I called CT in ndale, talked to Lina and made a consultation for next

> > Wednesday. YAY! I was so excited after we got off the phone. They were

> > planning on doing his mold after the consultation,to avoid another trip for

> > us, since we know we want to procede with treatment.

> >

> > But, later, I got a call from Amber who was the clinician I talked to

> > yesterday (that one that actually made me feel there was hope! yesterday

> >

> > She said she needed more information, and asked me to email pictures of my

> > son, so she can see his head and everything. But, then she said,

> >

> > I am more than happy to see for consultation, but I do want to make

> > sure you are aware that after evaluating him in person and taking all of his

> > medical history into account I may not recommend treatment depending on my

> > findings. I realize this would be a huge commitment for both and your

> > entire family and I want to be fair in my recommendation and expected

> > outcomes.

> >

> > I immediately felt discouraged! I don't think it is fair that kids with

> > special needs be treated like their appearances don't matter. I am not

> > saying that how she feels, but it just made me feel that way. To my

> > knowledge, there is no medical reason he couldn't be banded.

> >

> > Maybe I'm reading too much into it. But then, maybe I'm kidding myself - to

> > a lot of people, my son is intimidating...but what people fail to realize -

> > his issues are temporary! His cleft palate will be fixed someday! His lip

> > will heal more and be less noticeable! The trach will be removed someday! So

> > when the rest of him is fixed up, why cant he have the chance at a nice head

> > to go with it?...

> >

> > It just made me feel that because he was born with birth defects, that they

> > will be against helping him

> >

> > And I'm just really feeling like that is what I am going to hear next week

> > - that they're sorry they can't help us

> >

> > If everyone could send some positive thoughts and prayers my way next week,

> > I'd appreciate it!

> >

> > thanks!

> >

> >

> >

>

[Guest guest]

I'll be thinking about you and little on Wednesday. Our next appointment with Amber is on Monday.

Leila

Maysa, 15 months old, 5 weeks left in DOC band 2

www.mymaysa.wordpress.com

From: michaelann32 <michaelann32@...>Subject: Re: feeling discouraged today..Plagiocephaly Date: Tuesday, April 21, 2009, 8:27 PM

You are all right. Thank you! :)I am usually very positive, however I'm finding it a little hard to be with all the hurdles we have to cross!And, looking at it with a clearer head, I'm sure you are right, its more of a general statement. And I'm trying not to get my hopes up, so maybe it was a good statement to make.And with his history, most people do expect to see a small, thin, failure to thrive looking baby, but he is NOT that. He looks more like the Michelin man He is still growing well, so that is on our side I do believe! :)thanks everyone, and I'll keep you posted!> > >> >> > I called CT in ndale, talked to Lina and made a consultation for next> > Wednesday. YAY! I was so excited after we got off the phone. They were> > planning on doing his mold after the consultation, to avoid another trip for> > us, since we know we want to procede with treatment.> >> > But, later, I got

a call from Amber who was the clinician I talked to> > yesterday (that one that actually made me feel there was hope! yesterday > >> > She said she needed more information, and asked me to email pictures of my> > son, so she can see his head and everything. But, then she said,> >> > I am more than happy to see for consultation, but I do want to make> > sure you are aware that after evaluating him in person and taking all of his> > medical history into account I may not recommend treatment depending on my> > findings. I realize this would be a huge commitment for both and your> > entire family and I want to be fair in my recommendation and expected> > outcomes.> >> > I immediately felt discouraged! I don't think it is fair that kids with> > special needs be treated like their appearances don't matter. I

am not> > saying that how she feels, but it just made me feel that way. To my> > knowledge, there is no medical reason he couldn't be banded.> >> > Maybe I'm reading too much into it. But then, maybe I'm kidding myself - to> > a lot of people, my son is intimidating. ..but what people fail to realize -> > his issues are temporary! His cleft palate will be fixed someday! His lip> > will heal more and be less noticeable! The trach will be removed someday! So> > when the rest of him is fixed up, why cant he have the chance at a nice head> > to go with it?...> >> > It just made me feel that because he was born with birth defects, that they> > will be against helping him > >> > And I'm just really feeling like that is what I am going to hear next week> > - that they're sorry they can't help us >

>> > If everyone could send some positive thoughts and prayers my way next week,> > I'd appreciate it! > >> > thanks!> >> > > >>