DMD Parent Chat

twinglema (Oct 27, 2009 8:09:47 PM)
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twinglema (Oct 27, 2009 8:10:05 PM)
momma i am gonna check back for you

paper (Oct 27, 2009 8:10:14 PM)
hi

twinglema (Oct 27, 2009 8:10:18 PM)
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anna (Oct 27, 2009 8:26:52 PM)
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paper (Oct 27, 2009 8:27:01 PM)
hi anna

anna (Oct 27, 2009 8:27:19 PM)
hey paper

anna (Oct 27, 2009 8:27:24 PM)
just us?

paper (Oct 27, 2009 8:27:26 PM)
how are u

paper (Oct 27, 2009 8:27:31 PM)
yep so far

anna (Oct 27, 2009 8:27:45 PM)
busy! just got R home from work and making dinner

anna (Oct 27, 2009 8:28:05 PM)
as usual, I only have a few minutes to chat

paper (Oct 27, 2009 8:28:09 PM)
i will understand if u want to make dinner

anna (Oct 27, 2009 8:28:21 PM)
R got flu shot yesterday and pneumonia shot today

paper (Oct 27, 2009 8:28:29 PM)
good

paper (Oct 27, 2009 8:28:46 PM)
i R your son or hubby i forget

paper (Oct 27, 2009 8:29:03 PM)
is even

anna (Oct 27, 2009 8:29:08 PM)
next the N1H1 when it comes in--his pulmonary doc insists everyone with dmd have it

anna (Oct 27, 2009 8:29:37 PM)
son, 28 with dmd, on NIV and works full-time at Mcrosoft

paper (Oct 27, 2009 8:29:51 PM)
cool good for him

twinglema (Oct 27, 2009 8:30:09 PM)
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anna (Oct 27, 2009 8:30:15 PM)
yes, it is pretty amazing since he can onloy move 2 fingers and is on vent

twinglema (Oct 27, 2009 8:30:17 PM)
has momma come on?

paper (Oct 27, 2009 8:30:18 PM)
you should ask him if windows 7 is going to wortth it or not lol

anna (Oct 27, 2009 8:30:21 PM)
Twingle--lost??

anna (Oct 27, 2009 8:30:30 PM)
yes, they all love 7

twinglema (Oct 27, 2009 8:30:31 PM)
no?

paper (Oct 27, 2009 8:30:31 PM)
nope

anna (Oct 27, 2009 8:30:47 PM)
usually Twingle is busy on Tuesday?

paper (Oct 27, 2009 8:31:00 PM)
hum i heard it has a good program for handicapp

paper (Oct 27, 2009 8:31:13 PM)
on screen typing or something

twinglema (Oct 27, 2009 8:31:27 PM)
i was worried about kent

anna (Oct 27, 2009 8:31:28 PM)
they all have that now and for last 10 years

twinglema (Oct 27, 2009 8:31:33 PM)
so wanted to check

anna (Oct 27, 2009 8:31:38 PM)
what was going on with K?

twinglema (Oct 27, 2009 8:31:55 PM)
he spiked a temp, no other symptoms 2 nights ago

anna (Oct 27, 2009 8:32:05 PM)
hmmm, hope he is ok

twinglema (Oct 27, 2009 8:32:05 PM)
went to doc today

anna (Oct 27, 2009 8:32:11 PM)
good

twinglema (Oct 27, 2009 8:32:22 PM)
his nurse thought it was staph i guess he has rash on his arm

paper (Oct 27, 2009 8:32:33 PM)
brb

twinglema (Oct 27, 2009 8:32:35 PM)
his doc kept telling her to wait another day

anna (Oct 27, 2009 8:32:38 PM)
we went to hosp yesterday for MDA clinic and today for pulmonary and they check you at the door for H1N1

twinglema (Oct 27, 2009 8:32:50 PM)
they are doing that here too

twinglema (Oct 27, 2009 8:33:13 PM)
at childrens noone but parents sibs allowed and only if no symptoms and only with mask

twinglema (Oct 27, 2009 8:33:33 PM)
scary considering way more people die of reg flu

anna (Oct 27, 2009 8:33:37 PM)
Paper, you probably have that on-screen on whatever you are using now. R has used it for a long time--got thru university with it

twinglema (Oct 27, 2009 8:34:01 PM)
they say hannah and i dont need vaccine since we have had it

anna (Oct 27, 2009 8:34:16 PM)
was there vomiting with it?

paper (Oct 27, 2009 8:34:21 PM)
ok bk

twinglema (Oct 27, 2009 8:34:23 PM)
yep

twinglema (Oct 27, 2009 8:34:30 PM)
but not all have it i guess

anna (Oct 27, 2009 8:34:41 PM)
they say I am too old to need it

paper (Oct 27, 2009 8:34:45 PM)
i guess i dont know where to look to find it my new laptop has xp on in

anna (Oct 27, 2009 8:35:14 PM)
ok, will get that infor to you in a moment--brb if I get the boot

paper (Oct 27, 2009 8:35:16 PM)
i need something to make chat and just plain typing easer

twinglema (Oct 27, 2009 8:35:21 PM)
well if we ever get and shots, luke will get one

paper (Oct 27, 2009 8:35:24 PM)
k ty

twinglema (Oct 27, 2009 8:35:45 PM)
sam gets nasal one wed

twinglema (Oct 27, 2009 8:36:00 PM)
any not and

paper (Oct 27, 2009 8:36:13 PM)
i went to the ent today

anna (Oct 27, 2009 8:36:31 PM)
and R went to pulmonologist

twinglema (Oct 27, 2009 8:36:40 PM)
how did that go?

twinglema (Oct 27, 2009 8:36:56 PM)
we ahve to go to hosp to see cardio in nov

paper (Oct 27, 2009 8:37:07 PM)
he said i def have dysphagia

twinglema (Oct 27, 2009 8:37:14 PM)
prob get frisked before thwy let us in

twinglema (Oct 27, 2009 8:37:27 PM)
how do they treat that paper?

anna (Oct 27, 2009 8:37:33 PM)
Paper--here is the path: start>programs>accessories>accessability> on-screen keyboard

twinglema (Oct 27, 2009 8:37:45 PM)
i sure hope momma is sleeping and not in er

paper (Oct 27, 2009 8:38:00 PM)
i dont know yet i have to have a better 3 phase swollow test

anna (Oct 27, 2009 8:38:03 PM)
me too--if not, let us know how you are doing Momma

paper (Oct 27, 2009 8:38:06 PM)
ty anna

twinglema (Oct 27, 2009 8:38:14 PM)
have a good rest of week i gotta go

anna (Oct 27, 2009 8:38:20 PM)
ok, tc

twinglema (Oct 27, 2009 8:38:23 PM)
if i hear form her i will let you know

twinglema (Oct 27, 2009 8:38:28 PM)
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anna (Oct 27, 2009 8:38:28 PM)
ty

paper (Oct 27, 2009 8:39:24 PM)
hey i found it

paper (Oct 27, 2009 8:39:28 PM)
tell r ty

anna (Oct 27, 2009 8:39:29 PM)
Paper, can you stand most textures of food?

anna (Oct 27, 2009 8:39:38 PM)
ye, it was there all the time

paper (Oct 27, 2009 8:39:45 PM)
ya all i have a problem with it drinks

anna (Oct 27, 2009 8:40:15 PM)
that is typical--do you have to swallow twice for each sip? R does

anna (Oct 27, 2009 8:40:42 PM)
and R cannot stand thick liquids like milkshakes that they wanted him to have

paper (Oct 27, 2009 8:40:48 PM)
it is scarry sometimes

paper (Oct 27, 2009 8:41:12 PM)
i cant eather

anna (Oct 27, 2009 8:41:28 PM)
yes, R sometimes aspirates into his lungs and it takes me an hour to get it out so he won't get aspiration pneumonia

paper (Oct 27, 2009 8:42:11 PM)
i hope i dont get worse

anna (Oct 27, 2009 8:42:51 PM)
or, learn how to deal--worst care scenario get feeding tube(which we were horrified to get, but glad we did)

anna (Oct 27, 2009 8:43:27 PM)
the swallowing people should help you deal

paper (Oct 27, 2009 8:43:29 PM)
the ent wants to do a 3 phase swollow study

anna (Oct 27, 2009 8:43:42 PM)
yes, that yummy barium!

paper (Oct 27, 2009 8:43:51 PM)
i hope so

anna (Oct 27, 2009 8:43:55 PM)
and it is all on camera!

paper (Oct 27, 2009 8:44:02 PM)
yuck lol

paper (Oct 27, 2009 8:44:26 PM)
lol gag and hurl

anna (Oct 27, 2009 8:44:33 PM)
if you get too thin you will have to think about g-tube

anna (Oct 27, 2009 8:45:06 PM)
I have fattened R up very well-maybe too well

paper (Oct 27, 2009 8:45:17 PM)
that wont happen for a long time

anna (Oct 27, 2009 8:45:47 PM)
ok, sorry gotta go serve dinner. nice chatting! ttyl and let me know how you like osk

paper (Oct 27, 2009 8:45:50 PM)
i needa good diet

paper (Oct 27, 2009 8:46:02 PM)
by anna

anna (Oct 27, 2009 8:46:10 PM)
goodnight Paper

anna (Oct 27, 2009 8:46:14 PM)
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paper (Oct 27, 2009 9:09:36 PM)
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