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Re: Sam

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Hi,

could you use specific songs that cue him as to what you might do in working

with his mouth....sort of " prepare him " for this? Then maybe alternate a

" favored " or " accepted " task with some of the tasks he doesn't like. That has

helped me with a student or two like this.....just a thought....Kathleen

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Just a suggestion:

order " TIME TO SING " ! ( www.pittsburghsymphony.org/time2sing)

It is a CD made for kids with severe speech issues, but unlike those others

which sound as if they were recorded in a garage by someone on valium, this

has musical arrangements by Moricz ( Mr. Rodgers Neighborhood), and

musicians from the Pittsburgh Symphony and the Pittsburgh Opera Orchestras.

Typically developing kids respond well to this, also. Speech pathologist

Hammer determined the songs, the exact words used, and the metranomic

speed. The words are significantly slower than most children's recordings,

but the music is interesting....

I mention this because you say that a song is a powerful motivator for " Sam " .

good luck.

Cowles Moir

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Thanks Kathleen,

I do sing the Raffi song Brush Your Teeth when I use the toothbrush, but after a year he still won't let me past those teeth! I'll have to make up a tongue song and give it a try.

Dajaz

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  • 1 year later...
Guest guest

Sam:

Your new doctor sounds wonderful - just the kind of

doctor we all wish we were able to find. He seems to

be concerned about you, your entire self, your life

and emotions, and not just your aches and pains with

this dang RA. Sounds like you have landed in a safe

harbour - wishing you smooth sailing!

Kathe in CA

__________________________________________________

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I appreciate that ...

it is a strange concept to feel safe....within the medical

confines...whatever the outcome, his answers to the questions were very

enlightening (however i do not recall the questions posed to him by my

husband) which really does not help...

there was an interesting situation in the waiting room whilst i was

waiting....a woman came in with her daughter..the woman was using a walker

with wheels....she was tremendously bent over and it took her ever so long

to get into the chair..at which point her daughter moved wayyyyyyyy down to

the other end of the waiting room and told her mother to get over next to

her....i cringed within my soul and offered my strength to help her up

knowing the toll it would take...she was so grateful she almost cried....the

others in the waiting room were aghast at what was before their eyes...in

some small way i feel my small offerings of help were paid back

exponentially by the kindness of " Andy " the doctor....and payback was not

what i was seeking....i was seeking to aid a person who was being treated

horrificly by her daughter....

i told the doctor about the ra support group as he was told we have lost our

friends and family and have an angry daughter...and he listened ever so

gently....he apologized that he was away for four weeks on a course and

could not see me before august middle....but was glad of the support and

wealth of information the group offered...

somehow gentleness of nature is more potent than any opiate....an

understanding gesture of trying to seek answers...to aid...

it has been many doctors to find him....i just knew that to be treated badly

by any doctor is not acceptable and so i kept searching....

oh dear...i wished the journey for all of us was not so difficult...i wish

for all of us good things..

hugs all

sam

Re: [ ] Sam

> Sam:

>

> Your new doctor sounds wonderful - just the kind of

> doctor we all wish we were able to find. He seems to

> be concerned about you, your entire self, your life

> and emotions, and not just your aches and pains with

> this dang RA. Sounds like you have landed in a safe

> harbour - wishing you smooth sailing!

>

> Kathe in CA

>

>

>

> __________________________________________________

>

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  • 2 years later...

Hi ,

Sam is a doll, what a face!! I agree with , I think his plagio

is severe. If Cranial Tech is an option for you, you really should go

there. They are the best in the business.

>

> Hi-

>

> I posted a few picture of my son Sam (just introduced in a prior

> post). It was hard to get a good view of the top of his head, but

> these are the best that I have so far. Can you let me know your

> thoughts on the severity of the plagio? To me, it looks worse than

> pictures of many of the others that I have seen banded, but just

> wanted some thoughts so that I will be prepared for the doctor on

> Monday.

>

> Thanks,

>

> Mom to Sam 4.5 months (plagio/tort/scoliosis?) and (3 years

at

> the end of the month)

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,

I was doing some more thinking on Sam's situation after reading some of the other comments on possible severity. He is a great age to be banded like I already said. However, NOPCO modifies the STARband to make it passive. He is in the age range for a passive band however with his severity a truly active band would be more effective. I would look for a ortho that uses a active STARband or Hanger band or I would go to CT. Now some orthos don't use our terminology. To determine if it is active or passive ask how frequently an infant Sam's age would need to be seen for adjustments. An infant under 6 months in an active band needs to be seen every week, maybe 2 weeks if they are a slow grower (but unusual). Older infants are seen every 2 weeks in active bands (maybe 3 for the really "old" ones - LOL). My daughter could have been seen every 5 days at Sam's age. She evntually worked her way up to 2 weeks by 7 1/2 months.

I hope I haven't confused you. I would definitely ask the dr for an open ended RX - ie. cranial orthosis or cranial remoulding band (same thing different words) with substitution allowed. Does that sound right other mods?

mom to na

DOC Grad 2/04

Tort Resolved

South Carolina

www.thefilyaws.com

stripes6060 <taime@...> wrote:

Hi ,Sam is a doll, what a face!! I agree with , I think his plagio is severe. If Cranial Tech is an option for you, you really should go there. They are the best in the business. > > Hi-> > I posted a few picture of my son Sam (just introduced in a prior > post). It was hard to get a good view of the top of his head, but > these are the best that I have so far. Can you let me know your > thoughts on the severity of the plagio? To me, it looks worse than > pictures of many of the others that I have seen banded, but just > wanted some thoughts so that I will be prepared for the doctor on > Monday. > > Thanks,> > Mom to Sam 4.5 months

(plagio/tort/scoliosis?) and (3 years at > the end of the month)For more plagio info

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