Parents of Young Adults with DMD

anna (Oct 8, 2008 8:13:38 PM)
(This user has entered Parents of Young Adults with DMD)

momma (Oct 8, 2008 8:14:12 PM)
hi anna

anna (Oct 8, 2008 8:14:23 PM)
Hi--just us again?

momma (Oct 8, 2008 8:14:33 PM)
yep

anna (Oct 8, 2008 8:15:08 PM)
well, if everything is ok with you all I will continue feeding R and check back later

momma (Oct 8, 2008 8:15:36 PM)
ok

momma (Oct 8, 2008 8:37:17 PM)
(This user has left DigiChat)

momma (Oct 8, 2008 8:40:46 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Oct 8, 2008 8:42:11 PM)
hi

momma (Oct 8, 2008 8:42:20 PM)
hello

anna (Oct 8, 2008 8:42:22 PM)
how is yoour family?

momma (Oct 8, 2008 8:42:40 PM)
ok how about yours

anna (Oct 8, 2008 8:42:51 PM)
ok, hubby never got sick

momma (Oct 8, 2008 8:43:06 PM)
we just got aour flu shots today

anna (Oct 8, 2008 8:43:10 PM)
daughter and her family just called us from Disneyland

momma (Oct 8, 2008 8:43:26 PM)
having a good time ill bet

anna (Oct 8, 2008 8:43:43 PM)
yes, but I really think age 3 is not the best age to go

eg (Oct 8, 2008 8:43:44 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Oct 8, 2008 8:43:51 PM)
Hi Eg

momma (Oct 8, 2008 8:43:54 PM)
hi eg

momma (Oct 8, 2008 8:44:02 PM)
yea a little young

eg (Oct 8, 2008 8:44:23 PM)
Hello

momma (Oct 8, 2008 8:44:23 PM)
how are you eg

eg (Oct 8, 2008 8:44:32 PM)
good here

eg (Oct 8, 2008 8:44:35 PM)
busy

eg (Oct 8, 2008 8:44:47 PM)
How are both of you?

momma (Oct 8, 2008 8:44:57 PM)
ok here

anna (Oct 8, 2008 8:45:01 PM)
I got my individual provider hours back, as after R switched into a different state program they "forgot" to switch me too

eg (Oct 8, 2008 8:45:34 PM)
anna are you a paid caregiver for your son?

eg (Oct 8, 2008 8:45:51 PM)
we are getting ready to move we decided to buy a home

anna (Oct 8, 2008 8:45:55 PM)
yes, 293 hours a month are paid

momma (Oct 8, 2008 8:46:09 PM)
i may need to add a few nursing hours hopfull get my knee fixed soon

anna (Oct 8, 2008 8:46:13 PM)
oh, so nice Eg. and what a great time to buy!

eg (Oct 8, 2008 8:46:19 PM)
oh nice we have to wait till michael turns 18 next year

eg (Oct 8, 2008 8:46:37 PM)
yeah we got a pretty good home for not bad price

anna (Oct 8, 2008 8:46:44 PM)
yes, we had to wait until age 18 also

momma (Oct 8, 2008 8:46:51 PM)
us too

anna (Oct 8, 2008 8:47:00 PM)
is it all on one level?

eg (Oct 8, 2008 8:47:25 PM)
yes its is

eg (Oct 8, 2008 8:47:30 PM)
its not very large 1

eg (Oct 8, 2008 8:47:37 PM)
1395 sq feet

anna (Oct 8, 2008 8:47:37 PM)
oh Momma--knee surgery--just what a dmd mom needs

anna (Oct 8, 2008 8:47:52 PM)
not

eg (Oct 8, 2008 8:48:02 PM)
u will need surgery momma?

jayonwheels (Oct 8, 2008 8:48:27 PM)
(This user has entered Parents of Young Adults with DMD)

momma (Oct 8, 2008 8:48:28 PM)
i just tierd of waiting seems like it doesnt matter how much discomfort

momma (Oct 8, 2008 8:48:35 PM)
yea i think so eg

momma (Oct 8, 2008 8:48:41 PM)
hi jay

eg (Oct 8, 2008 8:48:43 PM)
hi jay

eg (Oct 8, 2008 8:48:53 PM)
do you have alot of pain

jayonwheels (Oct 8, 2008 8:49:03 PM)
Hey

anna (Oct 8, 2008 8:49:16 PM)
hi jay--how is your life rolling along?

momma (Oct 8, 2008 8:49:22 PM)
my appt isnt till 16 th but i called and they said if he done in surgey tommrow he would fit me in

anna (Oct 8, 2008 8:50:05 PM)
does your son have a spare wc for you Momma?

jayonwheels (Oct 8, 2008 8:50:11 PM)
pretty good, just working on my yahoo group

momma (Oct 8, 2008 8:50:12 PM)
it very stiff and hard to get up from sitting so try to keep going till it hurts that i have ti sit

momma (Oct 8, 2008 8:50:21 PM)
yea anna

eg (Oct 8, 2008 8:50:36 PM)
my knee just gets a bit stiff sometimes

momma (Oct 8, 2008 8:50:46 PM)
my sister inlaw has crutches but i dont know how to use them lol

eg (Oct 8, 2008 8:51:08 PM)
hubby could not use crutches very well when he had to

anna (Oct 8, 2008 8:51:24 PM)
you learn what you have to learn. look at me learning how to do a g-tube. I am so slow with it still.

momma (Oct 8, 2008 8:51:24 PM)
how are your groups comming along jay

anna (Oct 8, 2008 8:51:37 PM)
a dmd group?

momma (Oct 8, 2008 8:51:42 PM)
yea im sure ill be fine

anna (Oct 8, 2008 8:52:10 PM)
but, what am excuse for goofing off, to try to see a bright side

anna (Oct 8, 2008 8:52:23 PM)
and you will feel so much better later too

eg (Oct 8, 2008 8:52:27 PM)
don't worry anna after awhile you will be able to do it with your eyes shut

momma (Oct 8, 2008 8:52:31 PM)
it was like when i had mri i hated laying in one spot then i got to thinking now i kinda know how are boys feel

jayonwheels (Oct 8, 2008 8:52:37 PM)
yea, it's a dmdgroup

anna (Oct 8, 2008 8:52:58 PM)
jay, my son just logged into the wc gang

anna (Oct 8, 2008 8:53:09 PM)
you are welcome here too of course

jayonwheels (Oct 8, 2008 8:54:07 PM)
cool

anna (Oct 8, 2008 8:54:15 PM)
I need it to alarm 1 hour before we are supposed to get up

momma (Oct 8, 2008 8:54:29 PM)
whys that anna

anna (Oct 8, 2008 8:54:33 PM)
today we heard it at 5:30

momma (Oct 8, 2008 8:54:50 PM)
wow way to early i dont go to bed till 1 am

eg (Oct 8, 2008 8:55:14 PM)
sometimes I go to bed that late momma

anna (Oct 8, 2008 8:55:27 PM)
so his tummy can clear so I can Vent it when we get up--he is always so gassy when he wakes up, we found that venting the tune helps. we also found out it is not fun to vent a full tummy lol

momma (Oct 8, 2008 8:55:32 PM)
i a bad habbit iev gotten into

anna (Oct 8, 2008 8:55:43 PM)
well, R has to go to work

anna (Oct 8, 2008 8:56:02 PM)
so we always try to have lights out at 10

anna (Oct 8, 2008 8:56:16 PM)
so he won't be too tired to work all day

eg (Oct 8, 2008 8:56:41 PM)
whats the bad habit momma?

anna (Oct 8, 2008 8:56:55 PM)
he is going to take 100 days off when his contract is up

momma (Oct 8, 2008 8:56:57 PM)
well when kent had sleeping issue i d just get to sleep and have to get up so i just start staying up late

eg (Oct 8, 2008 8:57:10 PM)
when m drinks gatorade and sometimes just when I open tube to connect feeds blue gaterade come out LOL

momma (Oct 8, 2008 8:57:19 PM)
well deserved break

momma (Oct 8, 2008 8:57:30 PM)
for R nad you anna

anna (Oct 8, 2008 8:57:50 PM)
yes, we will have to get some projects so we don't get lazy

eg (Oct 8, 2008 8:58:11 PM)
that will be a nice break for both of you

anna (Oct 8, 2008 8:58:39 PM)
yes, it was like I had a job haha

momma (Oct 8, 2008 8:59:18 PM)
well i gotta help with kent shower it 10 oclock here so gonna check out night all

eg (Oct 8, 2008 8:59:24 PM)
ok momma night

anna (Oct 8, 2008 8:59:34 PM)
except we have had the lunch aide for awhile now--his English is not much better I am sorry to say. and he tries to overprotect R which makes R

jayonwheels (Oct 8, 2008 8:59:41 PM)
goodnight!

anna (Oct 8, 2008 8:59:41 PM)
night Momma

anna (Oct 8, 2008 9:00:02 PM)
uncomfortable is end of that sentence

eg (Oct 8, 2008 9:00:02 PM)
so he is overprotected

anna (Oct 8, 2008 9:00:30 PM)
well, aide is afraid R will get hurt and he will get the blame I think

eg (Oct 8, 2008 9:00:59 PM)
oh

anna (Oct 8, 2008 9:01:10 PM)
aide won't let Rgo anywhere in building alone, and is afraid a walker will come around a corner and crash into wc

eg (Oct 8, 2008 9:01:35 PM)
oh is he

anna (Oct 8, 2008 9:02:06 PM)
gets upset when R gives him the slip lol

anna (Oct 8, 2008 9:02:49 PM)
R is used to coming and going without a shadow, but aide cannot understand that that isn't his job I guess

eg (Oct 8, 2008 9:03:22 PM)
LOL

anna (Oct 8, 2008 9:03:37 PM)
better to overdo I think, so R is very patient

eg (Oct 8, 2008 9:03:45 PM)
yeah true

anna (Oct 8, 2008 9:04:21 PM)
tonight our shower aide is coming--he is also Russian, but speaks excellant English

anna (Oct 8, 2008 9:04:43 PM)
they both took classes together in Russian(agency caregiver classes)

eg (Oct 8, 2008 9:04:49 PM)
really

jayonwheels (Oct 8, 2008 9:05:11 PM)
I am going to go to the other room, take care, goodnight!

anna (Oct 8, 2008 9:05:26 PM)
now, I am still the g-tube tape queen

anna (Oct 8, 2008 9:05:29 PM)
night Jay

anna (Oct 8, 2008 9:05:42 PM)
when can I use less tape?

eg (Oct 8, 2008 9:06:06 PM)
night jay

jayonwheels (Oct 8, 2008 9:06:07 PM)
(This user has moved to Wheelchair Gang)

anna (Oct 8, 2008 9:06:27 PM)
I still use the trach pads and still need to change the dressings at least once a day

eg (Oct 8, 2008 9:06:35 PM)
usually when they get their mic key

eg (Oct 8, 2008 9:06:55 PM)
cause you can take off the feeding tube that gets attached to it

anna (Oct 8, 2008 9:07:15 PM)
the doc doesn't seem so keen on a mic key--but will do whtever R wants

eg (Oct 8, 2008 9:07:22 PM)
wonder why

anna (Oct 8, 2008 9:07:29 PM)
says they need to be changed too often

eg (Oct 8, 2008 9:07:33 PM)
m has had it for awhile

eg (Oct 8, 2008 9:07:38 PM)
I do the changing

anna (Oct 8, 2008 9:07:53 PM)
well, we will see after this heals

eg (Oct 8, 2008 9:08:03 PM)
maybe every few months its really easy

anna (Oct 8, 2008 9:08:30 PM)
we will have to do more research

eg (Oct 8, 2008 9:09:20 PM)
yeah you have to weigh all the options to see whats best

anna (Oct 8, 2008 9:09:29 PM)
I think we will see about R wearing the daypack as we will never get up to 3 cans a night

eg (Oct 8, 2008 9:09:50 PM)
m gets one can during the day and we use the pack also gets water during the day

anna (Oct 8, 2008 9:10:18 PM)
when do you get to close/move?

eg (Oct 8, 2008 9:10:58 PM)
oct 29 I am trying to move it maybe two days earlier cause we have to be out of this home, with it cleaned and carpets done by oct 31 4 pm

eg (Oct 8, 2008 9:11:16 PM)
we have been packing already

anna (Oct 8, 2008 9:11:22 PM)
houses in this area are about half a million for a 3 br, 2 bath

eg (Oct 8, 2008 9:11:30 PM)
oh my

eg (Oct 8, 2008 9:11:37 PM)
thats too much

anna (Oct 8, 2008 9:11:41 PM)
where we live they are less than half that

anna (Oct 8, 2008 9:11:53 PM)
(er, where hubby lives)

eg (Oct 8, 2008 9:11:58 PM)
yeah

eg (Oct 8, 2008 9:12:06 PM)
here too and less

anna (Oct 8, 2008 9:12:14 PM)
all about "location, location, location"

eg (Oct 8, 2008 9:12:17 PM)
its a new home

eg (Oct 8, 2008 9:12:26 PM)
not fancy but has some upgrades as it is a spec home

eg (Oct 8, 2008 9:12:48 PM)
and not very big but its what we can pay for

anna (Oct 8, 2008 9:12:50 PM)
how nice. do you get to choose flooring, or is all that already done?

eg (Oct 8, 2008 9:12:55 PM)
already done

eg (Oct 8, 2008 9:13:10 PM)
we will have to pull carpet in bedroom eventually

anna (Oct 8, 2008 9:13:25 PM)
people have really been getting into trouble trying to buy more house than they can afford

eg (Oct 8, 2008 9:13:28 PM)
but I would like wood floors thoughout the house just can't do that yet

eg (Oct 8, 2008 9:13:32 PM)
oh yeah

anna (Oct 8, 2008 9:14:10 PM)
our house has wood floors I would love to redo

eg (Oct 8, 2008 9:14:15 PM)
I just don't want to rent anymore and then have to move again

anna (Oct 8, 2008 9:14:22 PM)
carpet is not that good for wc's

eg (Oct 8, 2008 9:14:28 PM)
I really like wood floors

eg (Oct 8, 2008 9:14:29 PM)
yeah

anna (Oct 8, 2008 9:15:02 PM)
or laminate floors are supposed to be more durable than wood as to scratches, etc.

eg (Oct 8, 2008 9:15:45 PM)
I am not sure what brand or type of wood floors would be best for wc

anna (Oct 8, 2008 9:16:00 PM)
more research lol

anna (Oct 8, 2008 9:16:45 PM)
it is fun to move--esp. if you are free to redecorate

eg (Oct 8, 2008 9:17:10 PM)
yes I will have to research that

eg (Oct 8, 2008 9:17:30 PM)
yeah true and you can get rid of stuff you don't want or need

anna (Oct 8, 2008 9:17:37 PM)
well, chat time is over I guess we will get the boot soon

anna (Oct 8, 2008 9:18:48 PM)
this is my "free" evening since George is here until 10. I do have to do all the meds and tube care of course

anna (Oct 8, 2008 9:19:31 PM)
Goodnight Eg--I am so pleased to hear about your new home

eg (Oct 8, 2008 9:20:10 PM)
ok anna tc and thanks

eg (Oct 8, 2008 9:20:17 PM)
goodnight

anna (Oct 8, 2008 9:20:19 PM)
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eg (Oct 8, 2008 9:20:48 PM)
(This user has left DigiChat)

momma (Oct 8, 2008 9:30:54 PM)
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