[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

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Penny Victor
Sent: Saturday, January 24, 2004 12:02 PM
To: tri-med@xxxxxxxxxxxxx
Cc: tri-family@xxxxxxxxxxxxx
Subject: [tri-med] Re: [tri-family] aspirating?

----- Original Message -----
From: <victorian17109@xxxxxxxxxxx>
Subject: [tri-family] aspirating?
> > I am so sorry I didn't reply to those of you that replied to my
posting.
I had my computer crash and other things.  Logan has been having cronic
intestinal viruses.  He has lost weight since October.  We have been
trying
every thing.  He is starving so he is miserable.  I do have a question.
Logan is a silent aspirator.  The last time he had a swallow study has
been
close to a year ago.  I have been giving him a bottle with thick formula
since Thanksgiving.  I couldn't take him screaming any more from being
hungry.  He is so much more content and pleasant after having a bottle
or
two.  Is there a possibility that he could be able to take feeds orally
and
not aspirate or is it something that once you aspirate you will always
aspirate?  Tina

Hi Everyone :o)
Yes...It's me...Penny...Devon's mom.  I'm copying this post to the med
list.
Also...for anyone that wants to know...I'm going to try REALLY hard to
post
a "catch up" post this weekend and let you all know what's been
happening
around here between appointments, pain spasms, depression, holidays,
computer freeze ups, work and school...but in the meantime I'm trying to
read some posts (backwards from present to way back 2000 something posts
back mind you) this morning and saw yours Tina...and I have a little
experience with silent aspiration issues so I thought I'd share it with
anyone who wants to read it.
Devon has been a silent aspirator his whole life...but we didn't get it
Dx'd
until he was 2 yrs old because Devon doesn't choke or cough until like
15-20
minutes AFTER he's swallowed whatever it is that he's
swallowed/aspirated.
The swallow study was done to try and find a cause or contributing
factor
for his asthma...we never expected to find what we did. What we did
actually
find was that Devon was aspirating nearly every swallow...every
consistancy.
The speech pathologist that did the test took it upon herself to tell us
that we should immediately stop oral feeds and have a GTube put in.
Well...I
cried all the way home because I couldn't fathom Devon not eating and
drinking by mouth as he LOVES eating and drinking as his growth would
attest
to (he's 8 yrs old and 4 ft tall and 54 lbs last time we checked).
So....instead of doing what she told us to...I started calling my
trisomy 13
contacts and found out about thickening liquids and sticking to soft
foods
which we did anyway. We then went to see his pulmonologist armed with
what
we'd found out and he backed us all the way and told us that a GTube
should
be a last resort...especially considering Devon had never had aspiration
pneumonia or any other kind for that matter. We also started intensive
oral
motor therapy at our pulmonologists recommendation (3 times per week for
a
year)...plus exercises at home. And well...Devon's desire to eat and
drink
coupled with our desire to see him continue to eat and drink orally,
made us
quite successful!!! Devon's swallow became much more coordinated and he
eats
ALOT of different foods these days including cake, cookies, pizza,
sandwiches, any kind of soft dishes...even some very tender meats and
veggies, nutrigrain bars, and we still thicken his liquids (Oh...and he
now
drinks out of a sippy cup except for one 2 oz "comfort baba" every night
for
bedtime in a sitting/slightly reclined position) and probably always
will.
Devon will probably always have aspiration issues to some degree....he
had a
cleft palate (it was repaired at 9 months) and the anatomy of his mouth
isn't like everyone elses. I asked his doctor about repeating the
swallow
study not too long ago but he said "why put him through it when he's not
having any respiratory problems?"...and he's right...so when or if Devon
has
any issues that start to pop up sometime down the road we'll know right
where to look but until then he's going to keep eating and drinking
orally
like he has been for 8 years and 7 months now!!!!! So things can improve
in
some cases and views differ as to what we should have done (re: the
speech
pat. thought we should immediately stop oral feeds and the Pulmo. was
willing to let us explore other things before going such a drastic
route)...obviously it differs with what kinds of things have been
happening
with your child...if Devon had been having recurring bouts of pnuemonia
then
we may have opted for the GTube but still tried to improve his swallow
coordination with the thickener and the oral motor therapy.
Hope this gives you some helpful information to chew on???
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 7
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


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

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