DMD Parent Chat
twinglema (Jan 28, 2010 7:50:00 PM)
matt-p (Jan 28, 2010 7:51:57 PM)
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matt-p (Jan 28, 2010 7:52:06 PM)
hey
matt-p (Jan 28, 2010 7:52:13 PM)
how are you
matt-p (Jan 28, 2010 7:53:04 PM)
waitin on winter storm here
twinglema (Jan 28, 2010 7:56:08 PM)
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twinglema (Jan 28, 2010 7:56:49 PM)
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twinglema (Jan 28, 2010 7:57:02 PM)
hi matt
matt-p (Jan 28, 2010 7:57:50 PM)
hey
matt-p (Jan 28, 2010 7:58:03 PM)
waitin on winter storm here
twinglema (Jan 28, 2010 7:58:33 PM)
oh fun
momma (Jan 28, 2010 7:58:34 PM)
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twinglema (Jan 28, 2010 7:58:40 PM)
freezing here
twinglema (Jan 28, 2010 7:58:43 PM)
hi momma
twinglema (Jan 28, 2010 7:58:50 PM)
hows my fav kent?
matt-p (Jan 28, 2010 7:58:58 PM)
got about 3 different stories on how bad its going to be
momma (Jan 28, 2010 7:59:00 PM)
hello
momma (Jan 28, 2010 7:59:05 PM)
getting better
anna (Jan 28, 2010 7:59:07 PM)
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twinglema (Jan 28, 2010 7:59:15 PM)
hi anna
momma (Jan 28, 2010 7:59:23 PM)
hi anna
twinglema (Jan 28, 2010 7:59:26 PM)
glad to hear that momma
anna (Jan 28, 2010 7:59:33 PM)
Hello the dynamic tr4io I see
matt-p (Jan 28, 2010 7:59:34 PM)
hey momma and anna
twinglema (Jan 28, 2010 7:59:36 PM)
i lost a very dear friend today
anna (Jan 28, 2010 7:59:42 PM)
oh no
momma (Jan 28, 2010 7:59:57 PM)
sorry to hear twingle
twinglema (Jan 28, 2010 8:00:03 PM)
i dont knowif i ever talked about him-he had a kidney transpant a while ago
matt-p (Jan 28, 2010 8:00:05 PM)
aawww
anna (Jan 28, 2010 8:00:13 PM)
rejected?
twinglema (Jan 28, 2010 8:00:20 PM)
went into hops with pneumonia had heart attack
twinglema (Jan 28, 2010 8:00:27 PM)
no actually kidney was ok
matt-p (Jan 28, 2010 8:00:29 PM)
oh no
momma (Jan 28, 2010 8:00:29 PM)
oh no
anna (Jan 28, 2010 8:00:38 PM)
so sorry
twinglema (Jan 28, 2010 8:01:25 PM)
they gave him lots of ativan(?) and he didnt wake up when expected so did a ct scan and he had a stroke that destroyed his right side of brain and moved the midline (?)
twinglema (Jan 28, 2010 8:01:29 PM)
thank you
twinglema (Jan 28, 2010 8:01:51 PM)
it was just so much suffering but i did get to hug him goodbye last night before they shut off machine
anna (Jan 28, 2010 8:01:51 PM)
my daughter called me in tears today, one of her patients died who had small children
twinglema (Jan 28, 2010 8:01:59 PM)
oh that is awful too
momma (Jan 28, 2010 8:02:05 PM)
awe that s sad
matt-p (Jan 28, 2010 8:02:11 PM)
aawww
anna (Jan 28, 2010 8:02:16 PM)
so many sad things.....
twinglema (Jan 28, 2010 8:02:42 PM)
on good side, the baby who has downs and almost died is going home before too long without a feeding tube!!!
paper (Jan 28, 2010 8:02:46 PM)
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twinglema (Jan 28, 2010 8:02:49 PM)
hi paper
paper (Jan 28, 2010 8:02:51 PM)
hi all
matt-p (Jan 28, 2010 8:03:00 PM)
great
twinglema (Jan 28, 2010 8:03:08 PM)
yep, a miricle for sure
anna (Jan 28, 2010 8:03:10 PM)
the nurses second guess if they could have done something different to save the patient
momma (Jan 28, 2010 8:03:19 PM)
brb
momma (Jan 28, 2010 8:03:22 PM)
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twinglema (Jan 28, 2010 8:03:22 PM)
i'm sure they do
twinglema (Jan 28, 2010 8:03:30 PM)
momma get bopoted?
twinglema (Jan 28, 2010 8:03:33 PM)
booted
anna (Jan 28, 2010 8:03:34 PM)
when something sad happens a new baby changes things
twinglema (Jan 28, 2010 8:03:39 PM)
yes
anna (Jan 28, 2010 8:03:52 PM)
I like "bopoted"!
paper (Jan 28, 2010 8:03:58 PM)
so whats everyone talking about
twinglema (Jan 28, 2010 8:04:03 PM)
they both have a caringbridge site so i would read the bad one, then the good one
anna (Jan 28, 2010 8:04:10 PM)
sorry to say death and dying
twinglema (Jan 28, 2010 8:04:17 PM)
i lost a friend today
anna (Jan 28, 2010 8:04:22 PM)
and one miracle baby
paper (Jan 28, 2010 8:04:27 PM)
aww i am sorry twing
twinglema (Jan 28, 2010 8:04:32 PM)
ty
anna (Jan 28, 2010 8:04:48 PM)
and my daughter lost a young father who was her patient
paper (Jan 28, 2010 8:05:16 PM)
thats rough i have lost a few pts when on the job over the years
twinglema (Jan 28, 2010 8:05:32 PM)
i was listening to klove on the way to the hosp and everthing they said and played seemed to be meant for me
twinglema (Jan 28, 2010 8:05:53 PM)
as a nurses aid we lost alot in the nursing home i worked at
anna (Jan 28, 2010 8:05:56 PM)
we met a young man, age 23, with dmd today and had lunch with him and his mom who is active on PPMD site
twinglema (Jan 28, 2010 8:06:09 PM)
wow, anna how is he doing
paper (Jan 28, 2010 8:06:38 PM)
anna are u on mymda site?
anna (Jan 28, 2010 8:06:42 PM)
he just graduated from University and has been doing internships in WA DC
anna (Jan 28, 2010 8:06:48 PM)
yes paper
twinglema (Jan 28, 2010 8:07:12 PM)
cool
anna (Jan 28, 2010 8:07:16 PM)
has NIV with small tube instead of mouthpiece like R uses
anna (Jan 28, 2010 8:07:27 PM)
flies with his vent
twinglema (Jan 28, 2010 8:07:29 PM)
neat
paper (Jan 28, 2010 8:07:33 PM)
there is a mom on there i think her name is leelees mom could u find her on there and talk to her about dmd
anna (Jan 28, 2010 8:07:58 PM)
yes, doesn't her daughter have dmd?
paper (Jan 28, 2010 8:08:00 PM)
she had a blog post a few days ago about her girl
paper (Jan 28, 2010 8:08:06 PM)
ya
anna (Jan 28, 2010 8:08:09 PM)
very rare
paper (Jan 28, 2010 8:08:21 PM)
i think she need a friend
twinglema (Jan 28, 2010 8:08:35 PM)
wow a daughter
paper (Jan 28, 2010 8:08:37 PM)
someone to solund off too u know
paper (Jan 28, 2010 8:08:42 PM)
sound
anna (Jan 28, 2010 8:08:51 PM)
did anyone here keep up with some of the mom's with girls with dmd--one was named April I recall?
twinglema (Jan 28, 2010 8:09:08 PM)
none i can remember
anna (Jan 28, 2010 8:09:26 PM)
I will have to ask "raybear"
paper (Jan 28, 2010 8:09:46 PM)
what causes a girl to have dmd
anna (Jan 28, 2010 8:10:06 PM)
same as a guy--errant genes
twinglema (Jan 28, 2010 8:10:16 PM)
her body reads the bad X instead of the good one
paper (Jan 28, 2010 8:10:52 PM)
does it affect the girls like the boys
twinglema (Jan 28, 2010 8:11:10 PM)
yes but they get it less often most are carriers
anna (Jan 28, 2010 8:11:23 PM)
usually is milder than guys I think
anna (Jan 28, 2010 8:12:03 PM)
and then we have the dmd "manifesting carriers" who are usually weak moms with cardiac problems
twinglema (Jan 28, 2010 8:12:23 PM)
thats me
paper (Jan 28, 2010 8:12:58 PM)
what is the difference between manifesting carriers and just a girl who has it
twinglema (Jan 28, 2010 8:13:02 PM)
only not too weak and cardio ok so far
twinglema (Jan 28, 2010 8:13:28 PM)
well, i dont have it, just have higher risk of heart probs, and some weird muscle stuff
twinglema (Jan 28, 2010 8:14:08 PM)
did you see about the exon skipping? i wondered why just skipping exon 51 is so important
matt-p (Jan 28, 2010 8:14:14 PM)
anna how was your trip
anna (Jan 28, 2010 8:14:28 PM)
we are going on Sat Matt
matt-p (Jan 28, 2010 8:14:34 PM)
oh
twinglema (Jan 28, 2010 8:14:50 PM)
where you going
paper (Jan 28, 2010 8:14:58 PM)
i guess i need to read more
anna (Jan 28, 2010 8:15:08 PM)
eastern WA for g'daughter's 5th birthday
matt-p (Jan 28, 2010 8:15:10 PM)
how is eg and M
paper (Jan 28, 2010 8:15:15 PM)
about all mds so i can understsand more
anna (Jan 28, 2010 8:15:38 PM)
yes, there isn't much out there about girls with dmd as it is so rare
twinglema (Jan 28, 2010 8:15:42 PM)
hey momma they are doing the first us exon skipping trial in columbus
twinglema (Jan 28, 2010 8:15:55 PM)
aww 5 is fun age
anna (Jan 28, 2010 8:15:56 PM)
Momma is gone..
twinglema (Jan 28, 2010 8:16:07 PM)
or about manifesteing carriers
anna (Jan 28, 2010 8:16:14 PM)
right
twinglema (Jan 28, 2010 8:16:14 PM)
rats
matt-p (Jan 28, 2010 8:16:26 PM)
no mice
anna (Jan 28, 2010 8:17:42 PM)
we are going to hear dmd researchers at UW next Thursday
paper (Jan 28, 2010 8:17:50 PM)
rats mice same difference they are both gross
matt-p (Jan 28, 2010 8:17:54 PM)
neat anna
matt-p (Jan 28, 2010 8:18:02 PM)
yes
matt-p (Jan 28, 2010 8:18:11 PM)
i hate them both
anna (Jan 28, 2010 8:18:16 PM)
sponsored by PPMD
paper (Jan 28, 2010 8:18:37 PM)
what does ppmd stand for
twinglema (Jan 28, 2010 8:18:51 PM)
wonder if luke and i should move to columbus for two months
anna (Jan 28, 2010 8:18:56 PM)
Parent Project for Muscular Dystrophy
paper (Jan 28, 2010 8:19:04 PM)
ok
matt-p (Jan 28, 2010 8:19:08 PM)
anna you get a chance ask them about parkinsons and milto
anna (Jan 28, 2010 8:19:20 PM)
they are just interested in DMD and BMD
matt-p (Jan 28, 2010 8:19:36 PM)
ok
twinglema (Jan 28, 2010 8:19:37 PM)
yeah, those things are specific
anna (Jan 28, 2010 8:19:37 PM)
they are not interested in mito Matt, just dmd
matt-p (Jan 28, 2010 8:19:51 PM)
ok
paper (Jan 28, 2010 8:20:04 PM)
twing do u ever do stride and ride
anna (Jan 28, 2010 8:20:04 PM)
oops--said that twice 2 different ways
matt-p (Jan 28, 2010 8:20:42 PM)
cant find anyone here at home that can tell us if milto and parkinson is related
twinglema (Jan 28, 2010 8:20:47 PM)
i like the new guidelines for dmd
anna (Jan 28, 2010 8:20:52 PM)
PPMD is for dmd and bmd is what I REALLY meant
twinglema (Jan 28, 2010 8:21:00 PM)
it says doc should monitor steroid effects
matt-p (Jan 28, 2010 8:21:03 PM)
its ok anna
twinglema (Jan 28, 2010 8:21:09 PM)
i know anna!
anna (Jan 28, 2010 8:21:16 PM)
I know you know!
twinglema (Jan 28, 2010 8:21:19 PM)
unlike our doc who poo-pooed em
twinglema (Jan 28, 2010 8:21:33 PM)
think iwill give her a copy of it
anna (Jan 28, 2010 8:21:36 PM)
really--docs should not poo-poo anything
paper (Jan 28, 2010 8:22:13 PM)
dr think they know everything when in reality they know only a tiny bit
anna (Jan 28, 2010 8:22:21 PM)
exactly
twinglema (Jan 28, 2010 8:22:27 PM)
she still argues with me over ti
twinglema (Jan 28, 2010 8:22:29 PM)
it
paper (Jan 28, 2010 8:22:33 PM)
and some dont even know that
matt-p (Jan 28, 2010 8:22:50 PM)
after all why do they say PRACTICE medicine
anna (Jan 28, 2010 8:22:59 PM)
lol
twinglema (Jan 28, 2010 8:23:04 PM)
so luke wants to go to the valentine dance and try to dance with sydney!
matt-p (Jan 28, 2010 8:23:17 PM)
neat
matt-p (Jan 28, 2010 8:23:25 PM)
you go luke
twinglema (Jan 28, 2010 8:23:26 PM)
he always falls for the tall girls lol
anna (Jan 28, 2010 8:23:26 PM)
ohhooo--teen years start
paper (Jan 28, 2010 8:23:29 PM)
i got a chance to try drangon today
twinglema (Jan 28, 2010 8:23:41 PM)
you like it paper?
anna (Jan 28, 2010 8:23:43 PM)
Dragon Naturally Speaking?
matt-p (Jan 28, 2010 8:23:44 PM)
neat paper
paper (Jan 28, 2010 8:23:45 PM)
ya i did
anna (Jan 28, 2010 8:23:52 PM)
which version?
paper (Jan 28, 2010 8:24:02 PM)
the pro version
paper (Jan 28, 2010 8:24:22 PM)
it was neat it only screwed up a couple time
paper (Jan 28, 2010 8:24:49 PM)
i like that it could open the web broser and search
matt-p (Jan 28, 2010 8:24:51 PM)
neat paper
paper (Jan 28, 2010 8:25:00 PM)
to bad i couldnt keep it
anna (Jan 28, 2010 8:25:05 PM)
last one R had was version 7--but MS has one built into Vista and later
paper (Jan 28, 2010 8:25:16 PM)
the pc it was on was slow
twinglema (Jan 28, 2010 8:25:21 PM)
what does R think of the apple i pad?
anna (Jan 28, 2010 8:26:04 PM)
he is reserving judgment he says
paper (Jan 28, 2010 8:26:06 PM)
and it was on vista
twinglema (Jan 28, 2010 8:26:30 PM)
i heard alot of experts say its basically a big ipod
anna (Jan 28, 2010 8:26:35 PM)
so, did you also find the one in Vista?
paper (Jan 28, 2010 8:26:54 PM)
the headphones were to big and heavy for me though made my head hurt
anna (Jan 28, 2010 8:26:56 PM)
a big EXPENSIVE one
paper (Jan 28, 2010 8:27:10 PM)
this one was like 800 $
anna (Jan 28, 2010 8:27:41 PM)
you can use other headphones of course--R's are very lightweight
paper (Jan 28, 2010 8:27:45 PM)
would be nice if it wasnt so expencive
paper (Jan 28, 2010 8:27:52 PM)
oh ya
paper (Jan 28, 2010 8:27:59 PM)
it was just on a test model
matt-p (Jan 28, 2010 8:28:04 PM)
good nite all
paper (Jan 28, 2010 8:28:08 PM)
night matty
anna (Jan 28, 2010 8:28:11 PM)
Night Matt tc
twinglema (Jan 28, 2010 8:28:20 PM)
nite
anna (Jan 28, 2010 8:28:41 PM)
so, Twingle, driving nice and SLOW??
momma (Jan 28, 2010 8:28:53 PM)
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matt-p (Jan 28, 2010 8:28:57 PM)
twinglema hope you do ok with looseing your friend
twinglema (Jan 28, 2010 8:28:59 PM)
wb stranger
anna (Jan 28, 2010 8:28:59 PM)
re-hi Momma
paper (Jan 28, 2010 8:29:00 PM)
wb momma
momma (Jan 28, 2010 8:29:11 PM)
sorry got side tracked
anna (Jan 28, 2010 8:29:12 PM)
we are on a more cheerful subject now
twinglema (Jan 28, 2010 8:29:24 PM)
i was talking about exon skipping study in columbus
matt-p (Jan 28, 2010 8:29:32 PM)
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momma (Jan 28, 2010 8:29:35 PM)
ohio?
twinglema (Jan 28, 2010 8:30:38 PM)
yep
twinglema (Jan 28, 2010 8:30:43 PM)
first us study
momma (Jan 28, 2010 8:30:55 PM)
dont know much about that stuff
twinglema (Jan 28, 2010 8:31:24 PM)
at nationwide childrens
anna (Jan 28, 2010 8:31:24 PM)
and we are going to hear dmd researchers speak next Thursday
twinglema (Jan 28, 2010 8:31:48 PM)
so far it has some boys in europe producing dystrophin
twinglema (Jan 28, 2010 8:32:17 PM)
i dont know if i should pursue it for luke
momma (Jan 28, 2010 8:32:57 PM)
why not what does he think about it?
anna (Jan 28, 2010 8:34:12 PM)
Luke seems to be progressing really slow--would have to see if he would have to stop Deflazacort and so on
twinglema (Jan 28, 2010 8:34:40 PM)
well it would also mean moving to columbus for awhile
anna (Jan 28, 2010 8:34:41 PM)
he may not be "typical" enough for study--but couldn't hurt to check it out
paper (Jan 28, 2010 8:34:48 PM)
could u afford to go there twing for a long period of time
twinglema (Jan 28, 2010 8:34:57 PM)
yeah, he is def not typical anything!
twinglema (Jan 28, 2010 8:35:14 PM)
money wise yes, leaving hubby iffy
anna (Jan 28, 2010 8:35:44 PM)
well---we left for a few years......R and I
paper (Jan 28, 2010 8:35:56 PM)
those are things you would have to weigh along with would it help luke
twinglema (Jan 28, 2010 8:35:57 PM)
yeah but bruce cant live totally by self
twinglema (Jan 28, 2010 8:36:02 PM)
yep
anna (Jan 28, 2010 8:36:25 PM)
right--lots to consider first
twinglema (Jan 28, 2010 8:36:26 PM)
if it was sam it would be def no as needles freak him out!
momma (Jan 28, 2010 8:36:32 PM)
if we had to do it all agin we would of moved to or closer to columbus
twinglema (Jan 28, 2010 8:36:50 PM)
i would move where it is warmer
anna (Jan 28, 2010 8:37:03 PM)
San Diego!!
momma (Jan 28, 2010 8:37:07 PM)
yea kids and i was just saying that twingle
twinglema (Jan 28, 2010 8:37:30 PM)
isnt it flooding there?
anna (Jan 28, 2010 8:37:51 PM)
hmmm--don't like mudslides??
twinglema (Jan 28, 2010 8:37:53 PM)
was watching hgtv and couple spent a fortune of vacation house in costa rica
paper (Jan 28, 2010 8:37:59 PM)
momma are u in the path of that new snow storm that is comming this weekend
twinglema (Jan 28, 2010 8:38:06 PM)
i can't afford a vaction house anywhere!
momma (Jan 28, 2010 8:38:12 PM)
us to were watching that twingle lol
twinglema (Jan 28, 2010 8:38:32 PM)
they should have taken the beach side house!
momma (Jan 28, 2010 8:38:38 PM)
i hope not just really cold paper
twinglema (Jan 28, 2010 8:38:44 PM)
id rather be in the ocean than see it from afar
twinglema (Jan 28, 2010 8:38:55 PM)
re3ally cold here too for one more day
anna (Jan 28, 2010 8:38:56 PM)
so many other parts of the country have much less costly homes than Seattle area
twinglema (Jan 28, 2010 8:39:17 PM)
well they are cheaper here but you freeze for a third of the year
momma (Jan 28, 2010 8:39:19 PM)
i think it beautifuk in seattle
twinglema (Jan 28, 2010 8:39:30 PM)
my brother loves olympia
anna (Jan 28, 2010 8:39:41 PM)
Seattle is very green thanks to all the rain
twinglema (Jan 28, 2010 8:39:44 PM)
i need to tell him he did not see a caribou, anna
momma (Jan 28, 2010 8:39:47 PM)
beautifl sorry lol
twinglema (Jan 28, 2010 8:39:51 PM)
lol
anna (Jan 28, 2010 8:39:58 PM)
has he seen Mt Rainier yet?
twinglema (Jan 28, 2010 8:40:03 PM)
it's still wrong1
twinglema (Jan 28, 2010 8:40:07 PM)
yes and he loved it
paper (Jan 28, 2010 8:40:11 PM)
it is cheep to live here as long as u can find a job but you do freeze for a few months then you burn for the rest
momma (Jan 28, 2010 8:40:12 PM)
MAN YOU SHOULD SEE HOW I TYPE AFTER A DRINK LOL
twinglema (Jan 28, 2010 8:40:21 PM)
LOL
anna (Jan 28, 2010 8:40:33 PM)
are we seeing that now?!
twinglema (Jan 28, 2010 8:40:34 PM)
i'm thinking wine sounds good
eg (Jan 28, 2010 8:40:47 PM)
(This user has entered DMD Parent Chat)
momma (Jan 28, 2010 8:40:49 PM)
i wish anna lol
twinglema (Jan 28, 2010 8:40:52 PM)
hey eg
eg (Jan 28, 2010 8:40:53 PM)
Hi
anna (Jan 28, 2010 8:40:53 PM)
Hey eg
momma (Jan 28, 2010 8:40:54 PM)
hi eg
twinglema (Jan 28, 2010 8:40:57 PM)
how is michael
momma (Jan 28, 2010 8:41:02 PM)
how M
paper (Jan 28, 2010 8:41:09 PM)
hi eg
eg (Jan 28, 2010 8:41:14 PM)
he is home but he keeps getting small plugs
eg (Jan 28, 2010 8:41:28 PM)
he feels something in his chest and he sounds dimished on his right side
twinglema (Jan 28, 2010 8:41:33 PM)
what can you do to help that eg?
anna (Jan 28, 2010 8:41:39 PM)
does guifenesin help at all?
eg (Jan 28, 2010 8:41:57 PM)
his secretions are thin
eg (Jan 28, 2010 8:42:12 PM)
cough assist and pounding every 2 hrs then every 4 hrs
momma (Jan 28, 2010 8:42:19 PM)
thats goodd
eg (Jan 28, 2010 8:42:26 PM)
nebs, pounding and cough assist
momma (Jan 28, 2010 8:42:37 PM)
he needs the vest
twinglema (Jan 28, 2010 8:42:38 PM)
poor guy
eg (Jan 28, 2010 8:42:44 PM)
we are trying to get a home percussor
anna (Jan 28, 2010 8:42:45 PM)
poor guy--mom pounding on him
eg (Jan 28, 2010 8:42:55 PM)
he hated the vest he tried it in hospital
momma (Jan 28, 2010 8:43:05 PM)
if ya lived closer you could have kents vest
momma (Jan 28, 2010 8:43:14 PM)
oh well i guess not
eg (Jan 28, 2010 8:43:19 PM)
the pounding really helps then I use a stethescope to listen
twinglema (Jan 28, 2010 8:43:33 PM)
he would rather pound than vest?
anna (Jan 28, 2010 8:43:47 PM)
I use a stethescope too, but not sure what I am hearing
anna (Jan 28, 2010 8:44:13 PM)
they need to give us lessons
eg (Jan 28, 2010 8:44:17 PM)
I can hear he is dimished on his right cause same side on left I can here his breathing more clearer
momma (Jan 28, 2010 8:44:42 PM)
kent has been dimished on left lower side for yrs
eg (Jan 28, 2010 8:44:59 PM)
the vest shakes them up and the percussor you have to move around but he does better with it
momma (Jan 28, 2010 8:45:05 PM)
he had bronchotist and cased it i was told
anna (Jan 28, 2010 8:45:06 PM)
diminished permanently Momma?
momma (Jan 28, 2010 8:45:15 PM)
yes
eg (Jan 28, 2010 8:45:20 PM)
yeah same here momma but his upper is now dimished a bit
momma (Jan 28, 2010 8:45:46 PM)
he was like 14 or so when it happened
twinglema (Jan 28, 2010 8:45:47 PM)
thats just part of the dmd?
eg (Jan 28, 2010 8:45:52 PM)
his sats look good 96 but doc says the body can compensate
twinglema (Jan 28, 2010 8:45:57 PM)
how old is michael now?
eg (Jan 28, 2010 8:46:05 PM)
18
eg (Jan 28, 2010 8:46:12 PM)
not all have problems with secretions twingle
twinglema (Jan 28, 2010 8:46:13 PM)
geez he grew up fast
momma (Jan 28, 2010 8:46:42 PM)
so eveytime someone listen and freak out im like no hes been that way for yrs
eg (Jan 28, 2010 8:46:47 PM)
m is just one of lucky or unlucky ones
eg (Jan 28, 2010 8:47:01 PM)
yeah he did
momma (Jan 28, 2010 8:47:10 PM)
well gotta go kent got a nature call may be back maybe not
twinglema (Jan 28, 2010 8:47:15 PM)
ahhhh, nice glass of wine
eg (Jan 28, 2010 8:47:18 PM)
ok momma tc
twinglema (Jan 28, 2010 8:47:20 PM)
nite momma
twinglema (Jan 28, 2010 8:47:25 PM)
have good weekend
eg (Jan 28, 2010 8:47:42 PM)
I am trying to keep him out of the hospital but its scary when you can't clear them
twinglema (Jan 28, 2010 8:47:45 PM)
we are hosting four boys for basketball this weekend
eg (Jan 28, 2010 8:47:55 PM)
oh nice twingle
twinglema (Jan 28, 2010 8:47:56 PM)
i am so sorry eg
paper (Jan 28, 2010 8:47:58 PM)
i am going to my hip is hurting see u all later night
eg (Jan 28, 2010 8:48:04 PM)
night paper
paper (Jan 28, 2010 8:48:06 PM)
huggles for all
anna (Jan 28, 2010 8:48:15 PM)
night paper
paper (Jan 28, 2010 8:48:23 PM)
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eg (Jan 28, 2010 8:48:31 PM)
its ok twingle it just makes me think of Nick and Sunney and what he went through
anna (Jan 28, 2010 8:48:35 PM)
it will be a zoo there Twingle
eg (Jan 28, 2010 8:48:38 PM)
doc says there are still things to do
twinglema (Jan 28, 2010 8:48:46 PM)
nite paper
twinglema (Jan 28, 2010 8:48:59 PM)
gee ty anna first time i've ever done this
twinglema (Jan 28, 2010 8:49:08 PM)
need a snack sat and breakfast sun
twinglema (Jan 28, 2010 8:49:25 PM)
why is m having this issue now eg?
eg (Jan 28, 2010 8:49:30 PM)
I am not sure
anna (Jan 28, 2010 8:49:35 PM)
I hosted some missionary students once and they got blue new towel fuzz all over and one lost a diamond.....
eg (Jan 28, 2010 8:49:35 PM)
we use to be able to clear him
eg (Jan 28, 2010 8:49:48 PM)
oh gosh anna
twinglema (Jan 28, 2010 8:49:57 PM)
and docs can't do anything?
eg (Jan 28, 2010 8:50:06 PM)
just have to do the treatments
twinglema (Jan 28, 2010 8:50:08 PM)
im thinking choc chip cookies will be good
twinglema (Jan 28, 2010 8:50:14 PM)
prob need a million of em
anna (Jan 28, 2010 8:50:15 PM)
always
twinglema (Jan 28, 2010 8:50:36 PM)
me, i'll have more wine! a toast to my firend!
twinglema (Jan 28, 2010 8:50:41 PM)
friend
eg (Jan 28, 2010 8:50:51 PM)
too much wine twingle LOL
eg (Jan 28, 2010 8:50:53 PM)
firend
anna (Jan 28, 2010 8:51:00 PM)
I have no advice eg since R doesn't have that problem--his problem is aspiration with food
twinglema (Jan 28, 2010 8:51:09 PM)
hey i only just started
twinglema (Jan 28, 2010 8:51:27 PM)
i lost a friend today eg
eg (Jan 28, 2010 8:51:30 PM)
LOL
eg (Jan 28, 2010 8:51:34 PM)
ah sorry twingle
twinglema (Jan 28, 2010 8:51:36 PM)
ty
twinglema (Jan 28, 2010 8:51:45 PM)
so having a toast to him
anna (Jan 28, 2010 8:51:51 PM)
not easy to lose anyone toosoon
eg (Jan 28, 2010 8:51:55 PM)
no its not
twinglema (Jan 28, 2010 8:51:56 PM)
nope
eg (Jan 28, 2010 8:52:04 PM)
was it your friend with cancer?
twinglema (Jan 28, 2010 8:52:35 PM)
no, he had had kidney transpalnt long ago and had a stroke (unrelated)\
eg (Jan 28, 2010 8:52:41 PM)
oh ok
twinglema (Jan 28, 2010 8:52:43 PM)
his wife had the Ca though
eg (Jan 28, 2010 8:53:23 PM)
oh
twinglema (Jan 28, 2010 8:53:29 PM)
she is in remission
eg (Jan 28, 2010 8:53:35 PM)
thats good news
twinglema (Jan 28, 2010 8:53:47 PM)
yes, and so is m being home
eg (Jan 28, 2010 8:53:57 PM)
doc says all boys with dmd are different in how it affects them
twinglema (Jan 28, 2010 8:54:04 PM)
there for awhile too many of our boys were in hosp
eg (Jan 28, 2010 8:54:05 PM)
so far he is
eg (Jan 28, 2010 8:54:11 PM)
since sunday
eg (Jan 28, 2010 8:54:24 PM)
I am just tired
twinglema (Jan 28, 2010 8:54:28 PM)
i bet
eg (Jan 28, 2010 8:54:33 PM)
hubby has been helping he has too
twinglema (Jan 28, 2010 8:54:40 PM)
you have to take care of yourself too
eg (Jan 28, 2010 8:54:51 PM)
and my daughter in law had her baby monday
twinglema (Jan 28, 2010 8:54:51 PM)
well, he should help
twinglema (Jan 28, 2010 8:54:59 PM)
awwww what did she have?
eg (Jan 28, 2010 8:55:00 PM)
and son of course
eg (Jan 28, 2010 8:55:01 PM)
girl
eg (Jan 28, 2010 8:55:07 PM)
abygail
twinglema (Jan 28, 2010 8:55:12 PM)
cute name
anna (Jan 28, 2010 8:55:16 PM)
nothing like a little girl
eg (Jan 28, 2010 8:55:17 PM)
7.7 lbs 19 1/2 in
eg (Jan 28, 2010 8:55:19 PM)
oh yeah
anna (Jan 28, 2010 8:55:25 PM)
good sized
eg (Jan 28, 2010 8:55:30 PM)
yes she was
twinglema (Jan 28, 2010 8:55:30 PM)
their little clothes are soooo cute
eg (Jan 28, 2010 8:55:34 PM)
yep
eg (Jan 28, 2010 8:55:45 PM)
brb m's pump is beeping
twinglema (Jan 28, 2010 8:55:53 PM)
hannah lives in aero shirts and torm jeans lol
twinglema (Jan 28, 2010 8:56:06 PM)
torn
anna (Jan 28, 2010 8:56:18 PM)
never understood that fashion
twinglema (Jan 28, 2010 8:56:32 PM)
at least she never shows her tummy
anna (Jan 28, 2010 8:56:55 PM)
thank goodness
twinglema (Jan 28, 2010 8:57:02 PM)
well, she has to be an individual while wearing the same thing everyone else does!
anna (Jan 28, 2010 8:57:08 PM)
lol
anna (Jan 28, 2010 8:57:34 PM)
teen girls! good luck
twinglema (Jan 28, 2010 8:57:46 PM)
amen
anna (Jan 28, 2010 8:57:48 PM)
been there, barely survived
twinglema (Jan 28, 2010 8:57:57 PM)
gee ty
anna (Jan 28, 2010 8:58:27 PM)
but now daughter is upstanding RN with only 2 tattoos(that I know of)
twinglema (Jan 28, 2010 8:58:32 PM)
lol
anna (Jan 28, 2010 8:59:41 PM)
I have to pack everything but kitcfhen sink for trip--and cannot pack them until he uses the stuff Sat morn
anna (Jan 28, 2010 9:00:34 PM)
and need to fix up old dollhouse tonight
twinglema (Jan 28, 2010 9:00:39 PM)
fun
anna (Jan 28, 2010 9:00:56 PM)
my kids had a lot of fun with it--even R
anna (Jan 28, 2010 9:01:15 PM)
time to pass it on
twinglema (Jan 28, 2010 9:01:37 PM)
dollhouses are fun
eg (Jan 28, 2010 9:01:57 PM)
back
twinglema (Jan 28, 2010 9:02:02 PM)
wb
twinglema (Jan 28, 2010 9:02:07 PM)
M ok
anna (Jan 28, 2010 9:02:09 PM)
it has all the 1980's Fischer Price furniture
twinglema (Jan 28, 2010 9:02:26 PM)
oh what fun
eg (Jan 28, 2010 9:02:48 PM)
you going on a trip anna?
eg (Jan 28, 2010 9:03:00 PM)
yeah had to put water in his pump
anna (Jan 28, 2010 9:03:07 PM)
just across the state to see g'daughter for 5th bd
eg (Jan 28, 2010 9:03:12 PM)
ah ok
eg (Jan 28, 2010 9:03:18 PM)
sounds like fun
twinglema (Jan 28, 2010 9:03:28 PM)
what is the pump for
anna (Jan 28, 2010 9:03:34 PM)
we were just changed to Kangaroo Joey pump from Zevex
eg (Jan 28, 2010 9:03:52 PM)
feed pum[
eg (Jan 28, 2010 9:03:53 PM)
p
eg (Jan 28, 2010 9:03:58 PM)
we have that pump anna
anna (Jan 28, 2010 9:03:59 PM)
pumps food from bags in at whatever rate you set
anna (Jan 28, 2010 9:04:07 PM)
Kangaroo?
twinglema (Jan 28, 2010 9:04:09 PM)
it needs water
eg (Jan 28, 2010 9:04:11 PM)
yep
twinglema (Jan 28, 2010 9:04:13 PM)
?
eg (Jan 28, 2010 9:04:17 PM)
he needs water
twinglema (Jan 28, 2010 9:04:23 PM)
oh duh
eg (Jan 28, 2010 9:04:25 PM)
m does not drink enough fluids
anna (Jan 28, 2010 9:04:40 PM)
yes, we start R with a bag of water until Miralax in, then add formula
twinglema (Jan 28, 2010 9:04:40 PM)
too much wine ;)
eg (Jan 28, 2010 9:04:47 PM)
LOL
eg (Jan 28, 2010 9:05:14 PM)
we do water and formula during the day one can then at night formula 3 cans
twinglema (Jan 28, 2010 9:05:40 PM)
does he eat too?
anna (Jan 28, 2010 9:05:41 PM)
but R is down to 1/2 can at night at rate of 25
eg (Jan 28, 2010 9:05:53 PM)
yeah he does
eg (Jan 28, 2010 9:06:02 PM)
but still not enough
anna (Jan 28, 2010 9:06:25 PM)
R got too fat on the feedings so we cut way back for now
eg (Jan 28, 2010 9:06:46 PM)
m is now 101 lb s
anna (Jan 28, 2010 9:07:10 PM)
R is around 130 now
twinglema (Jan 28, 2010 9:07:55 PM)
luke is pushin 90
momma (Jan 28, 2010 9:08:51 PM)
back for a few
twinglema (Jan 28, 2010 9:09:01 PM)
wb
momma (Jan 28, 2010 9:09:04 PM)
ty
anna (Jan 28, 2010 9:09:14 PM)
they are all different, but too chubby or too stringy are not good for their hearts
momma (Jan 28, 2010 9:09:19 PM)
kent lost 7 lbs
eg (Jan 28, 2010 9:09:21 PM)
wb
momma (Jan 28, 2010 9:09:28 PM)
ty
anna (Jan 28, 2010 9:09:41 PM)
not surprised after all K has been thru lately
twinglema (Jan 28, 2010 9:09:47 PM)
really
momma (Jan 28, 2010 9:09:51 PM)
dr still wanted nothing by mouth but we dont agree
anna (Jan 28, 2010 9:10:23 PM)
how long did doc think you could hold out?
momma (Jan 28, 2010 9:10:45 PM)
we think he was dehydrated and not putting urnie out and the cdif infection was the cause of the flank pain
twinglema (Jan 28, 2010 9:11:22 PM)
momma knows best
anna (Jan 28, 2010 9:11:55 PM)
there is a family here that just got their children taken away from them because anorexic Mom didn't want them to get fat and was starving them. Mom crying on news because foster family is feeding them too much. the kids were so hungry!
momma (Jan 28, 2010 9:12:06 PM)
and as we sat waiting on dr today his stomach was growing loudly
twinglema (Jan 28, 2010 9:12:10 PM)
that stinks
twinglema (Jan 28, 2010 9:12:18 PM)
poor guy
twinglema (Jan 28, 2010 9:12:22 PM)
did doc hear it?
anna (Jan 28, 2010 9:12:39 PM)
so c' diff was in urine too?
momma (Jan 28, 2010 9:13:07 PM)
no but he agreeded to let him to start out slow if flanl pain returns stop eating
anna (Jan 28, 2010 9:13:18 PM)
or got inside him thru hole in colon?
twinglema (Jan 28, 2010 9:13:20 PM)
good
momma (Jan 28, 2010 9:13:23 PM)
no in his stool
anna (Jan 28, 2010 9:13:51 PM)
ok, that is what is confusing as c.dif is in ALL of our stools naturally
twinglema (Jan 28, 2010 9:14:11 PM)
what is a c diff?
momma (Jan 28, 2010 9:14:11 PM)
he did also have uti
momma (Jan 28, 2010 9:14:59 PM)
i guess we all have some but can resist it and from being on antibotics
momma (Jan 28, 2010 9:15:04 PM)
brb again
anna (Jan 28, 2010 9:15:09 PM)
a natural bacteria in intestines that causes trouble if gets other places--usually due to not washing hands after bm
twinglema (Jan 28, 2010 9:15:10 PM)
k
twinglema (Jan 28, 2010 9:15:22 PM)
like e coli?
anna (Jan 28, 2010 9:15:37 PM)
yes
twinglema (Jan 28, 2010 9:16:11 PM)
ok
anna (Jan 28, 2010 9:16:12 PM)
or, am I confused?? brb will look it up
anna (Jan 28, 2010 9:19:04 PM)
c dif is a bacteria in intestines but kept under wraps by other good bacteria
twinglema (Jan 28, 2010 9:19:20 PM)
ok
twinglema (Jan 28, 2010 9:19:39 PM)
so kent had it somewhaere else or it flared up in his bowels
twinglema (Jan 28, 2010 9:19:55 PM)
maybe all the antib's he has been on affected it?
eg (Jan 28, 2010 9:20:12 PM)
wonder why the dr bach site is not available
anna (Jan 28, 2010 9:20:37 PM)
I am tryijng to cut and paste but puter won't let me
twinglema (Jan 28, 2010 9:20:52 PM)
maybe busy?
eg (Jan 28, 2010 9:21:04 PM)
says link is broken
twinglema (Jan 28, 2010 9:21:12 PM)
that's not good
anna (Jan 28, 2010 9:21:23 PM)
yes, antibiotics may kill off the good bacteria and let the c dif get too strong
twinglema (Jan 28, 2010 9:21:49 PM)
hubby's doc always give him very specific antib's no broad range stuff
anna (Jan 28, 2010 9:21:51 PM)
anyway, Google it as it is very interesting
twinglema (Jan 28, 2010 9:21:55 PM)
ack
twinglema (Jan 28, 2010 9:22:03 PM)
you find weird things interesting lol
momma (Jan 28, 2010 9:22:27 PM)
ok hes all tucked in whew
anna (Jan 28, 2010 9:22:34 PM)
well, worked in hospitals almost 30 years and we do find odd stuff interesting
anna (Jan 28, 2010 9:22:53 PM)
black humor
anna (Jan 28, 2010 9:23:24 PM)
Momma--I was researching c dif and read above to see part of what I found out
twinglema (Jan 28, 2010 9:23:33 PM)
in the nursing home we would eat lunch and talk about the most disgusting things, the kitchen staff would gross out!
twinglema (Jan 28, 2010 9:23:47 PM)
momma gets to relax for a few
momma (Jan 28, 2010 9:24:19 PM)
yes its been a whole week we ev been home :)
anna (Jan 28, 2010 9:24:20 PM)
R is still a live wire going from computer to TV to watch Pawn Shop
eg (Jan 28, 2010 9:24:53 PM)
well I need to get going time for another treatment
anna (Jan 28, 2010 9:25:00 PM)
er, Pawn Stars that is on history channel
anna (Jan 28, 2010 9:25:07 PM)
ok Eg, glad M is home
eg (Jan 28, 2010 9:25:27 PM)
ty tc all have a good weekend
momma (Jan 28, 2010 9:25:28 PM)
glad for you eg tc
twinglema (Jan 28, 2010 9:25:29 PM)
ok eg
twinglema (Jan 28, 2010 9:25:32 PM)
keep in touch
eg (Jan 28, 2010 9:25:36 PM)
I will night
twinglema (Jan 28, 2010 9:25:43 PM)
nite
eg (Jan 28, 2010 9:25:46 PM)
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twinglema (Jan 28, 2010 9:25:58 PM)
ok no one else is allowed to be sick ok?
anna (Jan 28, 2010 9:26:18 PM)
our aide has to start using new call in system Monday--this will sevely cut into his time
momma (Jan 28, 2010 9:26:29 PM)
you still watching hgtv twingle i think turkey is beautiful
momma (Jan 28, 2010 9:26:42 PM)
why is she doing that
anna (Jan 28, 2010 9:27:02 PM)
? going to Turkey?
momma (Jan 28, 2010 9:27:16 PM)
i wish
twinglema (Jan 28, 2010 9:27:20 PM)
no i am in office
momma (Jan 28, 2010 9:27:25 PM)
oh
twinglema (Jan 28, 2010 9:27:29 PM)
felt like having a guiet spot tonight
twinglema (Jan 28, 2010 9:27:44 PM)
i have no desire to go there
anna (Jan 28, 2010 9:27:49 PM)
usually the family follows Mom into any quiet spot
twinglema (Jan 28, 2010 9:28:01 PM)
not when they get the big tv lol
anna (Jan 28, 2010 9:28:16 PM)
and if you close the bathroom door EVERYONE suddenly has to talk to you
twinglema (Jan 28, 2010 9:28:20 PM)
luke made me a lego dog after he found out my friend died
twinglema (Jan 28, 2010 9:28:26 PM)
oh yeah!
anna (Jan 28, 2010 9:28:37 PM)
ahh, tender hearted. so nice
twinglema (Jan 28, 2010 9:29:11 PM)
yep
anna (Jan 28, 2010 9:29:37 PM)
ok, gotta go make a call and wash old dollhouse and furniture
twinglema (Jan 28, 2010 9:29:45 PM)
ok anna
twinglema (Jan 28, 2010 9:29:49 PM)
have fun this weekend
momma (Jan 28, 2010 9:29:51 PM)
night anna
twinglema (Jan 28, 2010 9:29:57 PM)
learn alot
anna (Jan 28, 2010 9:30:09 PM)
Goodnight--I hope we do and can get into daughter's home down the new ramp
twinglema (Jan 28, 2010 9:30:20 PM)
you will figure it out
anna (Jan 28, 2010 9:30:21 PM)
untested ramp into basement
twinglema (Jan 28, 2010 9:30:26 PM)
ick
momma (Jan 28, 2010 9:30:26 PM)
have fun
anna (Jan 28, 2010 9:30:34 PM)
R has to stay in basement all weekend
anna (Jan 28, 2010 9:30:40 PM)
Goodnight
twinglema (Jan 28, 2010 9:30:44 PM)
rest of house not accessible
twinglema (Jan 28, 2010 9:30:46 PM)
nite
anna (Jan 28, 2010 9:30:52 PM)
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twinglema (Jan 28, 2010 9:31:04 PM)
well momma i may call it a nite too
twinglema (Jan 28, 2010 9:31:09 PM)
i am so glad kent is home
momma (Jan 28, 2010 9:31:13 PM)
ok ty
momma (Jan 28, 2010 9:31:18 PM)
goodnight
twinglema (Jan 28, 2010 9:31:22 PM)
have a good weekend
momma (Jan 28, 2010 9:31:26 PM)
you ntoo
twinglema (Jan 28, 2010 9:31:27 PM)
nite
momma (Jan 28, 2010 9:31:29 PM)
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twinglema (Jan 28, 2010 9:31:31 PM)
(This user has left DigiChat)