Parents of Young Adults with DMD

anna (Jun 24, 2009 7:55:25 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Jun 24, 2009 7:56:11 PM)
Hey Momma

momma (Jun 24, 2009 7:56:12 PM)
hi anna well at least tonight i can get on chat lastnight i tried about 10 times and couldnt

anna (Jun 24, 2009 7:56:32 PM)
hope you don't get the boot like last week

momma (Jun 24, 2009 7:56:38 PM)
yea

momma (Jun 24, 2009 7:56:44 PM)
me too :)

anna (Jun 24, 2009 7:56:48 PM)
we were at one of R's groups picnics in a park

momma (Jun 24, 2009 7:57:01 PM)
sounds like fun

anna (Jun 24, 2009 7:57:27 PM)
I sat by the waterfall and watched the ducks while they played bocce ball

momma (Jun 24, 2009 7:57:39 PM)
is it hot thier? it was 90 here i knew this would happen went from 70 to 90 in a weeks time

momma (Jun 24, 2009 7:57:51 PM)
sounds peaceful

anna (Jun 24, 2009 7:58:01 PM)
not hot, but warmish. windy today, but no rain...yet

anna (Jun 24, 2009 7:58:23 PM)
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momma (Jun 24, 2009 7:58:24 PM)
been awhile sence it rain thier ?

anna (Jun 24, 2009 7:58:38 PM)
(This user has entered Parents of Young Adults with DMD)

momma (Jun 24, 2009 7:58:39 PM)
oh boy here we go

anna (Jun 24, 2009 7:58:46 PM)
yeo--my turn

momma (Jun 24, 2009 7:59:01 PM)
grr it a bit annoying

anna (Jun 24, 2009 7:59:18 PM)
and my capital A and 16 font disappeared

momma (Jun 24, 2009 7:59:29 PM)
hmm

anna (Jun 24, 2009 8:00:09 PM)
I always make the font huge

momma (Jun 24, 2009 8:00:28 PM)
kent did ok with antisetic last week

anna (Jun 24, 2009 8:00:41 PM)
you were trying to tell us....

momma (Jun 24, 2009 8:00:46 PM)
i was nerveous for him

anna (Jun 24, 2009 8:01:12 PM)
yes, it is harder for us I think

momma (Jun 24, 2009 8:01:32 PM)
and antiseologist tells me that maliganant hypertremia is a allergic reaction ?

momma (Jun 24, 2009 8:01:54 PM)
thats how they described it to us i guess i need to do some checking

momma (Jun 24, 2009 8:02:04 PM)
is not i mean

anna (Jun 24, 2009 8:02:09 PM)
that sounds about right actually

anna (Jun 24, 2009 8:02:46 PM)
never knew anyone but K that had it

momma (Jun 24, 2009 8:02:57 PM)
then he tells me he look at report from when he got his sp tube that they gave kent way to much med

momma (Jun 24, 2009 8:03:14 PM)
oh boy why tell me now

anna (Jun 24, 2009 8:03:26 PM)
yes, wonder why he told you

momma (Jun 24, 2009 8:03:32 PM)
not sure

momma (Jun 24, 2009 8:04:04 PM)
i was asking hunder of question mabey he wanted to assure he knew what he was doing

momma (Jun 24, 2009 8:04:06 PM)
?

momma (Jun 24, 2009 8:04:22 PM)
hundered

anna (Jun 24, 2009 8:04:25 PM)
do you know any who have fundraisers, not for MDA or PPMD, but for only their child?

anna (Jun 24, 2009 8:04:50 PM)
is the new tube any different?

momma (Jun 24, 2009 8:05:03 PM)
yes it is differant

anna (Jun 24, 2009 8:05:06 PM)
haha too many questions here too

momma (Jun 24, 2009 8:05:21 PM)
and they coterized it looks better

anna (Jun 24, 2009 8:05:31 PM)
yes, that really helped R

momma (Jun 24, 2009 8:05:55 PM)
they reallymade me mad when we went back after the procedure the had a ox cylinder on his bed

anna (Jun 24, 2009 8:06:10 PM)
thru the bi-pap?

momma (Jun 24, 2009 8:06:16 PM)
i m like whats that for was thier problems hes like no

momma (Jun 24, 2009 8:06:34 PM)
yea i would assume he had it on during the procuder

anna (Jun 24, 2009 8:07:13 PM)
well, we had Louis to manage everything--I was really happy about that

momma (Jun 24, 2009 8:07:39 PM)
kent told me dr told himhe could still have ox kent told him no

anna (Jun 24, 2009 8:08:14 PM)
good for K, although it would have been ok thru the bi-pap

momma (Jun 24, 2009 8:08:32 PM)
it makes me nervous cause even at this hospital they dont have md

momma (Jun 24, 2009 8:08:40 PM)
patinets

anna (Jun 24, 2009 8:08:43 PM)
K may save his own life by knowing that someday

momma (Jun 24, 2009 8:09:24 PM)
but he had ox before with bipap but probaly c02 was high because of settings

anna (Jun 24, 2009 8:10:22 PM)
most hospitals don't even have capnographs

momma (Jun 24, 2009 8:10:45 PM)
but sometimes the dont listen to him he asked for gastric sution aftre the new tube was placed and he said nurse acted like she didnt even hear him

anna (Jun 24, 2009 8:11:06 PM)
she probably didn't know how to do it?

momma (Jun 24, 2009 8:11:10 PM)
they told me they monitored him for c02

momma (Jun 24, 2009 8:11:16 PM)
could be

anna (Jun 24, 2009 8:11:19 PM)
ok, good

momma (Jun 24, 2009 8:11:38 PM)
so is your van running

anna (Jun 24, 2009 8:12:16 PM)
R aspirated just as we were going out the door this morning. yes, van works great now that we found out what it was and they re=routed the fuel line

momma (Jun 24, 2009 8:12:47 PM)
sorry to hear about R but glad van is fixed

anna (Jun 24, 2009 8:13:05 PM)
he hadn't done it for a long time

anna (Jun 24, 2009 8:13:38 PM)
they have a new young adult MD support group near here, but it is during work hours

momma (Jun 24, 2009 8:13:42 PM)
i went to a nursing home to get kent weighed today but thier hoyer wouldnt work with his sling

anna (Jun 24, 2009 8:13:45 PM)
I still may take R

momma (Jun 24, 2009 8:14:01 PM)
oh i see

anna (Jun 24, 2009 8:14:03 PM)
no, they are very specialized

anna (Jun 24, 2009 8:14:12 PM)
have to take your own

momma (Jun 24, 2009 8:14:38 PM)
do you have any idea what R chair weighs

momma (Jun 24, 2009 8:14:57 PM)
well they weigh him on a drive on scale but it couldnt be right

anna (Jun 24, 2009 8:15:22 PM)
about 350 pounds?

anna (Jun 24, 2009 8:15:40 PM)
without R in it

momma (Jun 24, 2009 8:15:58 PM)
hmm well with chair and all his weighed 517.1

anna (Jun 24, 2009 8:16:48 PM)
that is alot, but I guess about right hubby says

momma (Jun 24, 2009 8:17:27 PM)
do ya think permobile is heavier?

anna (Jun 24, 2009 8:17:51 PM)
I'm sure you could access the booklet on-line and get a good weight

momma (Jun 24, 2009 8:18:08 PM)
i called company and they didnt have a clue

momma (Jun 24, 2009 8:18:29 PM)
mabey do some looking on net later

anna (Jun 24, 2009 8:18:38 PM)
that is bad, but it all depends on how they are made--what changes needed

momma (Jun 24, 2009 8:19:07 PM)
yea thats what i figured i know the vent weighs 13 lbs

anna (Jun 24, 2009 8:19:11 PM)
well, sit K on his Hoyer sling and take it all down to NH

momma (Jun 24, 2009 8:19:45 PM)
NH ?

anna (Jun 24, 2009 8:19:50 PM)
nursing home

momma (Jun 24, 2009 8:19:57 PM)
lol dah sorry

anna (Jun 24, 2009 8:20:03 PM)
not New hampshire!

momma (Jun 24, 2009 8:20:06 PM)
lol

momma (Jun 24, 2009 8:20:17 PM)
i know little slow

anna (Jun 24, 2009 8:20:52 PM)
we got notice Medicaid will no longer pay for cans of formula or special canned drinks UNLESS there is a feeding tube present

momma (Jun 24, 2009 8:21:01 PM)
did you see they cancelled mda camp

momma (Jun 24, 2009 8:21:04 PM)
oh really

anna (Jun 24, 2009 8:21:15 PM)
yes, and I have a story about that

momma (Jun 24, 2009 8:22:05 PM)
ok do share

anna (Jun 24, 2009 8:22:22 PM)
Friday night we heard a report on the news about MDA camps being cancelled and the reporter kept saying how these poor kids with MS wouldn't get to go!

momma (Jun 24, 2009 8:22:33 PM)
omg

anna (Jun 24, 2009 8:22:42 PM)
I e-mailed him my response and he called me to apologize!

momma (Jun 24, 2009 8:22:47 PM)
lol

anna (Jun 24, 2009 8:23:05 PM)
then redid the spot at 1 AM to replay on Sat

momma (Jun 24, 2009 8:23:26 PM)
geeze

anna (Jun 24, 2009 8:23:31 PM)
but during our call he kept saying how his grandmother had MD---when he meant MS!

momma (Jun 24, 2009 8:23:44 PM)
smart feller

anna (Jun 24, 2009 8:24:15 PM)
he called me very early Sat morning to apologize, as I was the first to point it out to him

anna (Jun 24, 2009 8:24:26 PM)
bet he will re-check his facts next time!

momma (Jun 24, 2009 8:24:46 PM)
ill bet so if not you have his number

anna (Jun 24, 2009 8:24:54 PM)
yes I do!

momma (Jun 24, 2009 8:25:48 PM)
back to kents tube the flap on the outside is a full circle instead of a small flap

momma (Jun 24, 2009 8:26:17 PM)
and when he get warm it get pretty red it cant breath very good

anna (Jun 24, 2009 8:26:19 PM)
another funny part was the story about camp was given him by a friend of R's and the reporter went out to his far-away town to interview him and found out he wasn't a cute little kid, but had tried to send reporter to see his nephew with dmd and reporter went to wrong town

momma (Jun 24, 2009 8:26:52 PM)
oh no

anna (Jun 24, 2009 8:27:12 PM)
that sounds hard to care for

momma (Jun 24, 2009 8:28:16 PM)
its a pain i wonder to when we hook him to gastric sution we dont hardly get anything before we were gettin a canister full by morning

anna (Jun 24, 2009 8:28:20 PM)
R's has 2 tiny tabs, but you can move them anywhere to change where they contact the skin

momma (Jun 24, 2009 8:28:39 PM)
yea we can move this one too

momma (Jun 24, 2009 8:28:54 PM)
depending if his stomach bloat

momma (Jun 24, 2009 8:29:10 PM)
does R have stomach bloating?

anna (Jun 24, 2009 8:29:14 PM)
maybe he doesn't need gstric suction? we just "exhaust" R's twice a day

anna (Jun 24, 2009 8:29:35 PM)
opening the tube is enough--we don't have to suction it

momma (Jun 24, 2009 8:29:40 PM)
no he really does anna

anna (Jun 24, 2009 8:30:07 PM)
I believe you--but don't understand all this stuff yet--and may never

anna (Jun 24, 2009 8:30:24 PM)
every one of our guys is different in what he needs

momma (Jun 24, 2009 8:30:25 PM)
mabey the other tube was potition right some times i think the old one sucked the nurtrin right back out

momma (Jun 24, 2009 8:30:38 PM)
thats for sure

anna (Jun 24, 2009 8:30:51 PM)
sometimes a bit of stomach contents shoots out

momma (Jun 24, 2009 8:31:06 PM)
yea

momma (Jun 24, 2009 8:31:20 PM)
does R eat greasey food at all

anna (Jun 24, 2009 8:31:21 PM)
but not a lot--but you can hear gas whoosh

momma (Jun 24, 2009 8:31:45 PM)
when kent eats greasey food he bloats like a ballon

anna (Jun 24, 2009 8:31:48 PM)
R doesn't eat much greasy food--I usually don't fry anything

anna (Jun 24, 2009 8:32:07 PM)
well, K doesn't have a gall bladder to handle any grease

momma (Jun 24, 2009 8:32:16 PM)
we dont really either but mc donalds food does

momma (Jun 24, 2009 8:32:29 PM)
or bread he doesnt tolerate well either

anna (Jun 24, 2009 8:32:46 PM)
toast better than bread?

momma (Jun 24, 2009 8:32:53 PM)
i know mcdonalds not a good choice

momma (Jun 24, 2009 8:33:08 PM)
any kind of bread fills him fast

anna (Jun 24, 2009 8:33:17 PM)
no, but I had a good story I told Twingle about McD's last week....

anna (Jun 24, 2009 8:33:30 PM)
see it in transcripts?

momma (Jun 24, 2009 8:33:45 PM)
i but these buns that are real thin works good for his sandwiches

momma (Jun 24, 2009 8:33:53 PM)
ill have to look it up

anna (Jun 24, 2009 8:34:48 PM)
if you toast bread you can split it in two with a sharp knife and make a sandwish with thin crusts

anna (Jun 24, 2009 8:35:11 PM)
our guys have a hard time opening their mouths very wide too

momma (Jun 24, 2009 8:35:19 PM)
yea thats too

anna (Jun 24, 2009 8:36:52 PM)
anyway, see that earlier question about people having fund-raisers for their kids, not for MDA or PPMD?

anna (Jun 24, 2009 8:37:13 PM)
I never would have thought to do that myself

momma (Jun 24, 2009 8:37:36 PM)
hubbies family had a fundraiser for kent ys ago to help modify his chair

anna (Jun 24, 2009 8:37:57 PM)
did he get enough?

momma (Jun 24, 2009 8:38:16 PM)
but a couple of families got new vans swimming pool lifts ect i guess i got loans for those things

momma (Jun 24, 2009 8:38:21 PM)
yeas

momma (Jun 24, 2009 8:38:48 PM)
they had before he had waiver

momma (Jun 24, 2009 8:39:05 PM)
for kents chair

anna (Jun 24, 2009 8:39:20 PM)
I wish there was a way for people to get money for vans with lifts--there is really no special help for that so people do have to get creative

momma (Jun 24, 2009 8:39:55 PM)
waiver here will pay 9,999 for mods

anna (Jun 24, 2009 8:40:08 PM)
that would cover about half

momma (Jun 24, 2009 8:40:24 PM)
and most car manufactures give like 500 -1000

momma (Jun 24, 2009 8:40:35 PM)
yea 1/2 of the mods

anna (Jun 24, 2009 8:40:47 PM)
a drop in the bucket from car manufacturers

momma (Jun 24, 2009 8:40:53 PM)
yea

anna (Jun 24, 2009 8:41:13 PM)
even used cars/vans coa=st an arm and a leg

anna (Jun 24, 2009 8:41:19 PM)
cost

anna (Jun 24, 2009 8:41:39 PM)
sloopy typing

momma (Jun 24, 2009 8:41:46 PM)
i wonder what kind of a deal could we get a credit a stimulus

momma (Jun 24, 2009 8:41:57 PM)
for a mod van

anna (Jun 24, 2009 8:42:26 PM)
I am hoping we don't need to get another van

anna (Jun 24, 2009 8:42:54 PM)
my Mom is walking a bit!

momma (Jun 24, 2009 8:43:00 PM)
we need a new one ours is a 1999 with 150,000 miles

momma (Jun 24, 2009 8:43:11 PM)
great!

anna (Jun 24, 2009 8:43:13 PM)
mine has 84,000

anna (Jun 24, 2009 8:43:22 PM)
2000

momma (Jun 24, 2009 8:44:04 PM)
ours wasnt new when we got it and we had it mod new ones like it were like $50'000

anna (Jun 24, 2009 8:44:37 PM)
yes, ours was $20,000 and the mods the same in 1999

momma (Jun 24, 2009 8:44:51 PM)
yep

anna (Jun 24, 2009 8:45:13 PM)
and, we had it shipped from factory direct to Arizona to have the mods and they lost it on the parking lot for 6 weeks!

momma (Jun 24, 2009 8:45:42 PM)
i called the place here he told me we could get a 2008 for 31.000 dodge mini

anna (Jun 24, 2009 8:45:51 PM)
and we couldn't get R in our full-sized since he had the spinal surgery

anna (Jun 24, 2009 8:46:04 PM)
yikes

momma (Jun 24, 2009 8:46:11 PM)
yea

anna (Jun 24, 2009 8:46:50 PM)
it is better to get from a private party usually

momma (Jun 24, 2009 8:47:07 PM)
yea but not to many around here

anna (Jun 24, 2009 8:47:18 PM)
no, you have to have LUCK

momma (Jun 24, 2009 8:47:29 PM)
yea

anna (Jun 24, 2009 8:48:27 PM)
well, the buses are good here if needed

momma (Jun 24, 2009 8:48:33 PM)
well anna kent getting a shower tonight i better go

momma (Jun 24, 2009 8:48:37 PM)
no buses here

anna (Jun 24, 2009 8:48:38 PM)
R has "door to door"

momma (Jun 24, 2009 8:48:51 PM)
kent does for work

anna (Jun 24, 2009 8:49:00 PM)
shower night here too, so ttyl--tomorrow maybe

momma (Jun 24, 2009 8:49:00 PM)
it though our county

momma (Jun 24, 2009 8:49:06 PM)
ok night

momma (Jun 24, 2009 8:49:21 PM)
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anna (Jun 24, 2009 8:49:42 PM)
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