[tri-med] Re: T&A's/swallowing/snore--

>What dose is Geneveieve taking for her weight?
(curiosity question)~Karen

She is taking 2ml 3x day and loves the minty flavor!!

>Alex didnt get his swallow back for about 5 years
following his T's and A's.~Karen

Oh My..... (yes my jaw did drop). We are trying
crushed graham crackers and add it to every other bite
of baby oatmeal cereal. Baby cereal and mashed
potatoes are it along with pediasure. Everything else
she'll mush it up and spit out or refuse to open to
take bites.

>Babies should NOT SNORE. Snoring is a sure sign of
some degree of sleep apnea and should be
checked.~Karen

That was an indication for us last fall, she has
always been 'nasal' or 'snarfy'. But her snoring was
getting worse and that is when she stopped breathing &
I got ahold of her dr that they got us in for the
sleep 

>He could finally stick his tongue out of his mouth. 
:0)  Maybe that's not really such a great thing.
LOL~Michelle

Genevieve does pretty good with tongue movements, but
something to ask her OT/ST next week. Everyone thinks
she may just be afraid to swallow & it may be still
hurting a bit. We don't go back to ENT till June 9th.
My oldest got a neon light that goes around the tongue
a couple of Halloweens ago(bright green), she did it
for gross factor for me and it worked. I did ask her
to hold her tongue out so I could read better at night
and the novelty wore out, real quick LOL Thank
goodness it's a one time thing and last about 6 hours
LOL

>Alex never voluntairly goes bare foot even today, not
even swimming. He wears water shoes.~Michelle

So would this still be considered sensory for him? Our
OT told us every adult in some ways or another has
sensory issues that they had as children and grew up
trying to find to comfort themselves to deal with it. 
For me I can't eating sticky candy like the gummy
stuff, or licorice(the black anise smell is
horrible)(I have a hard time even drinking SASSAFRAS
tea--shivers-)
So that would be sensory issues I have...

>How's that going? Your feelings on the therapy?
~Michelle

"AWESOME" I am so pleased with the accomplishments she
has been making with a tad regression from surgery,
but  they started her on another level with longer
periods of the modulated deep frequency and she drank
4oz in 5 mins and went to sleep. The OT said 5 mins of
Curelli for about a week and increase up to 15 mins.
Her bowels are regulated to 2 bm's a day like
clockwork. Definately a deeper awareness of her
knowing her body and functions. At bathtime, she
'used' to sit upright & play with toys and you could
dump water to rinse her hair, no effect having water
in her face. (Faith dreads water unless on her terms
lol) But then Genevieve began to wipe water from her
face with her hands. She is now learning slowly to
look up. She also now loves being on her tummy and has
initiated putting her chin into the water and grin,
and play with toys while on her tummy. But she is used
to the listening therapy & will grab the headphones or
try to point at CD's, so while she does her SAMONAS at
reg times, we listen to regular music during off
times. She will wiggle to the Wiggles. LOL Seeing the
differences first hand really has made me a believer
in the theory of listening therapy with the SAMONAS.
My husband(as well as our neurologist) has thrown me
the argument, what if she would of made these
'milestones' on her own without the SAMONAS? We'll
never know honestly, but I think all of the studies
show that with listening therapy it opens the brain to
new avenues. I am a huge fan of the SAMONAS and wish
it was available to more. 

Goes back to the idea we all have our styles of music
that make us feel a certain way, music has been around
from Day 1, it has just evolved to what we know it as
today. I'm a huge fan of celtic/classical, but like my
rock n roll to 'jam' LOL occasionally and reminence
the days of 'HEE HAW'...but give me bagpipes, mandolin
and piano and boy am I a happy camper LOL

I am hoping to try the SAMONAS over the summer with
Faith as with her out of school and see if it helps
with her issues. I have listened to the CD's, not
regularly, but I like what I hear. I'm sure my brain
does too : ) But Thanks for asking Michelle : )

>Untreated obstructive apneas effects and reduces
growth and development (all the energy is going into
breathing - there is nothing left to grow on)

Here's some "CLOUD 9" news!! Genevieve got weighed
yesterday and she gained "19oz" in 2 weeks, so she is
at 21 lbs even and 31.5" long. The dietitan said most
calories from Pediasure, but keep doing what we're
doing LOL I know she is getting better oxygen at
nights.

>NOBODY has a child with "issues". It seems to 
defy odds.

Didi Conn(Frenchy from Grease) has a son with autism
and is their national spokesperson. Al Corley(Steven
from Dynasty)his oldest daughter Sophie, has
Wolf-Hirschhorn syndrome(4p-). Didi Conn was on Today
show this week and Al had a story many years ago in
Ladies Home Journal(or Fammily Circle?) and the 4p-
stood out as that is what John's oldest passed away
from back in mid 80's. That I how I knew these two.








=====
~~Pamela~~
Mom to Savannah 15, Faith 5 and Genevieve 22 months
Partial Trisomy 5q
http://www.babiesonline.com/babies/g/gap2002/
http://www.ourhealthyhome.biz
http://ourhealthyhomewith.themomteam.com
 "You must be the change you wish to see in the world."--Gandhi 


        
                
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