[tri-med] Re: [tri-family] aspirating?

 Original Message -----
From: "Tina Arbogast" <victorian17109@xxxxxxxxxxx>
Subject: [tri-med] Re: [tri-family] aspirating?


> That is exactly what Logan does with his aspirations.  But everyone
> involved with Logan's care is refusing to allow him anything by mouth.
> It is common sense to me that since Logan didn't have anything by mouth
> for over a year of course he was going to aspirate.  He lost his reflex
> to shallow.  So I have been giving him things by mouth for a few months
> hoping that he will actually pass this test.
>
> Tina M. Arbogast

Hi Tina :o)
Something I remember very well from that whole period of time was when I was
gathering information before we went to see Devon's Pulmonologist. We
thought we were "preparing for battle"...in other words we thought the pulmo
would fight us about what we wanted to do and we wanted to be armed for bear
so to speak because we felt so strongly about Devon continuing to eat and
drink orally. Now again...I want to stress that had Devon been a poor eater
to begin with or had he had repeated bouts of pnuemonia...we may have felt
very differently about his continuing to eat orally no matter how much he
adored it. When Devon's doctor told us we should try what we wanted to with
the thickener and suggested the intensive oral motor therapy (that would be
my very strong suggestion to you too for Logan if I were the butting in kind
of person :o)...the oral motor therapy I mean)...we thanked his doctor
profusely and laughingly told him we had been prepared to fight with him
about what we wanted to do. Do you know what he said?  He said that
ultimately....WE are Devon's parents and even if he had tried to insist that
we do things differently...WE have the ultimate and last word on what's
right for OUR SON...noone else...NOT EVEN HIM! As it turned out he agreed
with us anyway...but we loved him for saying that and reminding us of a very
simple and important fact!!!!
Has anyone ever done any oral motor therapy with Logan...maybe used a
chewbag with him...done exercises to teach his tongue how to manipulate food
and drink???? Anything along those lines? I ask because with many simple
exercises that the speech therapist did with Devon and taught us to do with
him...Devon learned how to chew more accurately...how to manipulate food to
where it needed to be to get control of it...with his tongue...things like
that. Now he does successive swallowing and chews very well...if anything my
only complaint is that he eats and drinks too fast now...we really have to
insist with him that he take breaks and slow down...but he doesn't choke
much at all anymore even when he makes a pig of himself!!!!
Love,
Penny...devoted wife to Joe and "Mom" to Nick (13 yrs...lover of fudge,
rollercoasters, Harry Potter, Yu-Gi-Oh, Fishing, Legos, Popcorn Chicken,
Pizza, cheese sticks, chocolate icecream w/ovaltine sprinkles) and "Mommy"
to Devon (AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and
the Muppets, Barney, Blue, M&M's and food in general, 8 1/2 years old
(6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and
13)...Trooper...our newly adopted child (our infinitely patient and loving 3
year old male yellow lab...adopted into our family 12/13/02 :o) Snitch and
Lil' Dude (Nick's turtles :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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