[tri-med] Re: Fight for Devon's Thick-It AND a REAL WORD

Hi Tiffiney!
How many extra calories does the Polycose have? The Thick It has like 25
calories per serving...and believe me...Devon doesn't need extra calories
:o) He's about 4' 5 " tall and weighs somewhere between 87 and 90 pounds. If
it doesn't have too many extra calories, I'm sure I could use it. Let me
know and thanks :o)

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:
http://www.trisomyonline.org/victor.html      
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our Trooper on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"Those who matter don't judge me .... those who judge me don't matter."
 

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Hotmail
Sent: Sunday, April 29, 2007 1:35 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Fight for Devon's Thick-It AND a REAL WORD

Hey I am so glad this battle is over for at least one year for you.  I know 
of the stuff you are talking about.  I understand about Dysphagia very much.

This is what forced me to quit breastfeeding my daughter.  She aspirated 
liquids from birth to about 7 months old.  Because in the begining she 
aspirated all liquids no matter how thick they are she had a feeding tube 
for about 2 months when they finally caught it.At about 4 months old the 
feeding tube came out and we had to thicken everything that she drank.  At 
about 7 months her sucking muscles finally were starting to strength up she 
no longer aspirated.  We watch her still but for the most part she can drink

and eat to her ability today.  We still have trouble with the eating part 
(some of her muscles are not that coordinated yet).  All this to tell you I 
was putting polycose (just like thick it)  in her food not only for the 
aspiration but also to increase her caloie intake.  I have one unopened can 
of it that we are not using anymore.  If you want it please let me know.  I 
will gladly give it to you.  it expires May 2008.

Tiffiney
----- Original Message ----- 
From: "plugginalongpv" <plugginalongpv@xxxxxxxxxxxxx>
To: <tri-family@xxxxxxxxxxxxx>
Cc: <Livingwithtrisomy13@xxxxxxxxxxxxxxx>; <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, April 28, 2007 10:14 AM
Subject: [tri-med] Fight for Devon's Thick-It AND a REAL WORD


> Hi All :o)
> FABULOUS news today all around!!!
>
>
>
> First of all.some of you may remember that Devon's Thick It was denied
> through Med Waiver as it is initially every year (Med Waiver has been
> providing the Thick It for Devon since 2000). However this year.upon
> appeal.it was summarily denied. This forced us to request a Fair
> Administrative Hearing before an Administrative judge. We were advised we
> would be better served if we had an attorney. Of course we cannot afford 
> an
> attorney. BUT.we were given a phone number for The Advocacy Center for
> Persons with Disabilities. I called, truthfully expecting to be politely
> ignored. Imagine my surprise when they were not only very attentive and
> suitably outraged.but they jumped right in immediately putting it before
> their Care Committee to review the facts and decide if they could help us.
> Next a paralegal contacted me for more information and then an attorney
> named Dana called and emailed me as well. All of this BEFORE they even
> definitively took our case!!! At one point a few weeks ago I was contacted
> and told that YES Dana is representing us. I was very happy but being the
> worrier that I am, I thought I better clarify AGAIN that there is no cost
> for representation. Just seemed too good to be true :o) NEW FLASH! It is 
> NOT
> too good to be true!!!! They do this because it is what they live for.they
> fight for families/persons with disabilities at NO COST to the family.and
> they REALLY do fight for them!
>
> For the past month I have had to pester our beloved Pediatrician AND her
> nurse for letters and scripts which she has promptly supplied even though 
> I
> think she must be the busiest doctor on the planet.I've pestered Devon's
> pharmacist who is one of the few on the planet who will go the extra mile
> whenever needed and even lets us run a tab. For this I am eternally 
> grateful
> and thank them both very much!!!!
>
> Now, understand that Thick It is NOT covered by Medicaid even though it is

> a
> medical product used to thicken liquids/foods so that people who have
> Dysphagia (uncoordinated swallow that causes aspiration) are must less
> likely to aspirate. It is available over the counter.but using 2 - 30 oz
> cans per month (1 for school and 1 for home).it begins to get expensive 
> for
> families like ours with a limited income.
>
> Yesterday.I received an email from Dana (our attorney).that MEDICAID (who
> does not cover Thick It) is covering Devon's Thick It for a year. A letter
> with the special code/state # is forthcoming that we will be able to give
> Ken (our pharmacist) and he will be able to bill Medicaid for Devon's 
> Thick
> It :o) The attorney has asked us to please have our pharmacist order some
> Thick It for Devon and bill Medicaid with the code to make sure this will
> actually work before she asks for the Administrative Hearing to be
> dismissed. I'm so happy that we won't need to have the hearing after
> all.just the thought of going before a judge intimidates the spit out of 
> me
> :o)
>
>
>
> AND.ONE MORE THING!!!! DRUM ROLL PLEASE..
>
>
>
> The other day I was wearing my Elmo tshirt and Devon was sitting with me 
> and
> he was "talking" (making his beautiful sounds and noises). He kept looking
> at my shirt and pointing to/touching Elmo and saying "MoMo"! Not "mama" as
> he calls me. I was so excited and he kept doing it over and over again!!!
> But it gets better!!!! This morning I put one of his DVD's in and I had 
> him
> on the toilet and he SAID THE WHOLE WORD "Elmo".Joe heard it from the 
> other
> room too!!!! He said it like 3 times.not "MoMo".he REALLY SAID "Elmo"!!!!
> Could it be a fluke??? I suppose so.but I'm thrilled just the same :o) I
> really believe we can attribute this to his new Tech Talk :o) And possibly
> his new teacher/paras and classroom too??? He seems to be doing better in
> his new environment at school :o)
>
> He's missing his Tech Talk at the moment because it quit working 3 days 
> ago.
> And after trying what the directions say to try.it still didn't work. So I
> called AMDI expecting to hear grief over it since it's very new (just got 
> it
> in Feb). I spoke to a woman named Erica and she was very nice and very
> helpful. From everything I told her she is hoping it's only a faulty AC
> Adapter/Charger and she sent it out to us yesterday. She/we would rather 
> not
> separate us from the Tech Talk. I'm to call her when we get it and let her
> know if it works. If it doesn't,  she will send a pick up for the Tech 
> Talk
> and they will either fix whatever's wrong or give us a brand new one and
> we'll have it back within 5 days of pick up :o) So.it's great to know they
> are very supportive and stand behind their product :o)
>
>
>
> Anyway.that's our news bulletin for today :o)
>
> Take care.
>
>
>
> Love,
>
> Penny...loving & devoted wife to Joe, the best husband in the world...mom 
> to
> Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
> Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
> yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
> general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
> the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
> 12/13/02 :o) Please visit the webpage my wonderful friend Karen made for 
> me
> on our trisomy listserv at:
>
> http://www.trisomyonline.org/victor.html
>
> AND...Devon's moment of glory in Exceptional Parent Magazine...
>
> http://www.eparent.com/familiarfaces/ffaces_4_01.htm
>
> AND...see our Trooper on FL Lab Rescue's website at:
>
> http://www.labradorrescue.net/success/index.html (Look for the name 
> Trooper)
> AND :o) http://livingwithtrisomy13.org/album9.htm
>
> AND http://web.coehs.siu.edu/Grants/TRIS/
>
> "Those who matter don't judge me .... those who judge me don't matter."
>
>
>
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 

                  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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