[tri-med] Re: Philina Update

>I think that just cutting out the gummy bears and full strength coke
>should do the trick.

Probably, but her chewy granola bars, Jell-O, pudding & fruit cups were also
sources of highly concentrated sugar.  I can see why her blood sugar was
elevated, because we were relaying pretty heavily on sugar to keep her
weight from dropping.

>It's interesting about the cran grape juice affecting the stoma site.
>I must remember that, when folks speak about the tube sites leaking.
>You could be on to something there Fawna.

Yeah, I had to ask her program instructor when the spot appeared on her
shirt,
because that was also the day I first gave her the warm cocoa in the morning
too.  She hadn't realized that dark spot was on the inside of her shirt, and
had just assumed that she'd spilled some of her juice on herself when she
noticed it there in the afternoon.

>They keep telling us here in Aus, that it is NOT ONLY sugar we should
>be concerned about, but carbohydrates too to keep blood sugar levels
>at a low rate. (sigh again).

Yep that's the starch he expected me to cut out of her diet (bread, pasta,
rice & potatoes).  No way I dare do that though for her!

>This time of year is hell with all the goodies around to temp weak
>willed souls like me.

I guess I need to tell you about her Dad's company Christmas party this
year.  I feed her a cup of mac & cheese when she got home from program, and
worried that I might have messed up her appetite for the party dinner.  But
not a concern!  Mom didn't cook it, so she was all over that food.  Sipped a
diet coke and devoured 5 appetizers during 'happy hour' (2 crab cakes, 2
skewers of oily marinated olive, mushroom & tomato wedge, and 1 deviled egg.
Again I worried about her not eating any dinner, but she almost clear that
plate too
(a serving a chicken cordon blue, her pasta and most of mine, most of her
salad, all her cooked carrots, but left the squash, & 1/2 a roll w/ lots of
butter).  Then I said what the heck and got her a gooey brownie, but she
only ate a couple of bites of that.  It actually wasn't particularly sweet,
as it was made with semi-sweet chocolate. Really good I thought!  And then
when we got home she ate another cup of mac & cheese before she went to bed.
Now if she would eat like that all the time, I wouldn't have to worry about
her weight.  But of course she won't...


>Has Philina come to terms with the coyotes yet or is the tambourine still
on
>her bedroom door (just loved that story).

Never gonna happen!  But it's 3 tambourines, and they're still hanging on
the inside knob of our front door over 7 years later.  Remember, she moved
out of her bedroom after the Bandito incident, and took up residence in the
middle of the living room floor right there in front of that door with the
tambourines
on it.  She moved back into her bed after 'the cardiac surgery from h*ll',
but
has never retrieved her tambourines, and I've just left them there too.  We
still occasionally lose another cat, but I truly think that we lose far more
to the neighbor's German shepherd now then we do to coyotes.

Fawna, Research coordinator TRIS Project, mom
to Thom & Rhonda, Lara, & Philina 25yrs (PT6p
& Moya Moya Syndrome), Escondido, CA USA
http://home.mindspring.com/~fawna33/




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

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