Parents of Young Adults with DMD

matt-p (Jan 27, 2010 7:50:20 PM)
(This user has entered Parents of Young Adults with DMD)

matt-p (Jan 27, 2010 7:50:29 PM)
hey

anna (Jan 27, 2010 7:50:43 PM)
Hello Matt

matt-p (Jan 27, 2010 7:50:51 PM)
how is all

anna (Jan 27, 2010 7:51:35 PM)
Ok, getting ready to take trip across state and have to pack so much stuff for R

matt-p (Jan 27, 2010 7:52:05 PM)
i know

anna (Jan 27, 2010 7:52:08 PM)
we are meeting a man with dmd and his mom tomorrow that I met on the PPMD site

matt-p (Jan 27, 2010 7:52:37 PM)
i dont have the trach and feed tube but its pretty bad here to

matt-p (Jan 27, 2010 7:52:52 PM)
neat

anna (Jan 27, 2010 7:54:44 PM)
we are looking for a small group for R to attend again, and going to "nre" church

anna (Jan 27, 2010 7:54:50 PM)
new

anna (Jan 27, 2010 7:55:59 PM)
the church is in my old hi school where I graduated in the 60's--it is so remodeled over the years tho, you wouldn't recognize it

anna (Jan 27, 2010 7:56:45 PM)
we are trying to get more social

anna (Jan 27, 2010 7:57:06 PM)
Matt went to sleep?

matt-p (Jan 27, 2010 7:58:03 PM)
(This user has left DigiChat)

matt-p (Jan 27, 2010 8:08:15 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Jan 27, 2010 8:08:39 PM)
so, enjoy your trip Matt--wherever you were

matt-p (Jan 27, 2010 8:08:45 PM)
hey anna

anna (Jan 27, 2010 8:08:51 PM)
re-hey

matt-p (Jan 27, 2010 8:08:52 PM)
no

anna (Jan 27, 2010 8:09:01 PM)
get the boot?

matt-p (Jan 27, 2010 8:09:12 PM)
locked up

anna (Jan 27, 2010 8:09:25 PM)
are you using new system?

momma (Jan 27, 2010 8:09:46 PM)
(This user has entered Parents of Young Adults with DMD)

matt-p (Jan 27, 2010 8:09:54 PM)
hey momma

anna (Jan 27, 2010 8:10:00 PM)
Hi D

momma (Jan 27, 2010 8:10:18 PM)
hi a lol

momma (Jan 27, 2010 8:10:24 PM)
hi matt

matt-p (Jan 27, 2010 8:10:29 PM)
how is K

momma (Jan 27, 2010 8:10:40 PM)
getting better

matt-p (Jan 27, 2010 8:10:52 PM)
good

anna (Jan 27, 2010 8:11:01 PM)
is he allowed to eat solid food yet?

paper (Jan 27, 2010 8:11:21 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Jan 27, 2010 8:11:28 PM)
Hi Paper

paper (Jan 27, 2010 8:11:29 PM)
hi all

momma (Jan 27, 2010 8:11:33 PM)
not yet not even full liqiud yet going back to see dr tommrow

momma (Jan 27, 2010 8:11:36 PM)
hi paper

anna (Jan 27, 2010 8:12:02 PM)
K will forget what real food tastes like!

momma (Jan 27, 2010 8:12:20 PM)
yea hope he doesnt forget how to swallow

anna (Jan 27, 2010 8:12:24 PM)
do you let him smell yours? lol, that would be mean

paper (Jan 27, 2010 8:12:26 PM)
more snow tonight matty

matt-p (Jan 27, 2010 8:12:36 PM)
i know

paper (Jan 27, 2010 8:12:43 PM)
2 inches

matt-p (Jan 27, 2010 8:12:48 PM)
yuck

momma (Jan 27, 2010 8:12:50 PM)
no we try not to eat in front of him or eat what he doesnt like

matt-p (Jan 27, 2010 8:13:10 PM)
poor K

anna (Jan 27, 2010 8:13:20 PM)
no snow here at all this year except on Passes and eastern WA(where we are going Sat)

momma (Jan 27, 2010 8:13:24 PM)
the other night he went to bed so i thought id pop popcorn he yelled at me

paper (Jan 27, 2010 8:13:36 PM)
lol

momma (Jan 27, 2010 8:13:42 PM)
didnt think he could smell with bipap on

anna (Jan 27, 2010 8:13:43 PM)
R cannot manage popcorn anymore

momma (Jan 27, 2010 8:13:55 PM)
kent did a little

paper (Jan 27, 2010 8:13:55 PM)
poor guy

paper (Jan 27, 2010 8:14:06 PM)
i love popcorn

momma (Jan 27, 2010 8:14:09 PM)
me too

paper (Jan 27, 2010 8:14:13 PM)
but with out butter

paper (Jan 27, 2010 8:14:18 PM)
or salt

anna (Jan 27, 2010 8:14:36 PM)
mmmm, I do like Kettle Corn

momma (Jan 27, 2010 8:14:41 PM)
i use the 100 cal kind not much salt or butter

matt-p (Jan 27, 2010 8:14:46 PM)
i cant do popcorn anymore

momma (Jan 27, 2010 8:14:54 PM)
no i dont like kettle kind

paper (Jan 27, 2010 8:14:57 PM)
i like air popped best

anna (Jan 27, 2010 8:14:59 PM)
the husks get caught

anna (Jan 27, 2010 8:15:20 PM)
in R's teeth and throat

momma (Jan 27, 2010 8:15:25 PM)
yea

anna (Jan 27, 2010 8:16:31 PM)
I used my salad spinner to wash/spin R's facemask and nasal pillows today--it works well

matt-p (Jan 27, 2010 8:16:41 PM)
any word fro EG

momma (Jan 27, 2010 8:17:00 PM)
hope fully pt comes tommrow to help with kents sore back of his thigh

momma (Jan 27, 2010 8:17:10 PM)
sounds like a great idea anna

momma (Jan 27, 2010 8:17:32 PM)
michael eg son is home the last i herd

matt-p (Jan 27, 2010 8:17:49 PM)
good

anna (Jan 27, 2010 8:17:54 PM)
hope it feels better--he must have bruised that area

paper (Jan 27, 2010 8:18:59 PM)
there is a post on mymda that a little girl is supposed to have dmd i thought only boys could have it and girls were only carriers

momma (Jan 27, 2010 8:19:03 PM)
nurse said siakic nerve but from what i have read i dont tthink so

anna (Jan 27, 2010 8:19:18 PM)
it is rare, but some girls can have dmd

paper (Jan 27, 2010 8:19:29 PM)
humm

anna (Jan 27, 2010 8:19:41 PM)
sciatic nerve pain is excruciating

paper (Jan 27, 2010 8:19:42 PM)
genitic mutt

momma (Jan 27, 2010 8:20:14 PM)
i feel my daughter as a carrier has a small defficit

anna (Jan 27, 2010 8:20:17 PM)
there used to be a group for girls with dmd on this chat but it is so rare that few showed up

momma (Jan 27, 2010 8:21:02 PM)
have any of your mda offices closed?

paper (Jan 27, 2010 8:21:22 PM)
not around here as far as i know

anna (Jan 27, 2010 8:21:25 PM)
not that I know of here

momma (Jan 27, 2010 8:21:29 PM)
ours did now our branch is in michgan

matt-p (Jan 27, 2010 8:21:37 PM)
wow

anna (Jan 27, 2010 8:21:40 PM)
how far is that branch?

anna (Jan 27, 2010 8:21:46 PM)
from you

paper (Jan 27, 2010 8:22:07 PM)
there is one in fort wayne and one in indy here

momma (Jan 27, 2010 8:22:16 PM)
probably anther 30 minutes on top of the old one was 45 min

matt-p (Jan 27, 2010 8:22:28 PM)
wow

paper (Jan 27, 2010 8:22:34 PM)
isnt one closer

momma (Jan 27, 2010 8:22:44 PM)
we dont go to mda anymore but got a letter from them

anna (Jan 27, 2010 8:22:49 PM)
we have only needed to go there once--to borrow stuff from loan closet

anna (Jan 27, 2010 8:23:10 PM)
they usually have reps at the MDA Clinics

momma (Jan 27, 2010 8:23:15 PM)
our never had much on loan closet

momma (Jan 27, 2010 8:23:26 PM)
in*

anna (Jan 27, 2010 8:24:10 PM)
ours are trying to builld up their stock as they cannot help with equipment anymore(except $500 per year for repairs)

paper (Jan 27, 2010 8:24:16 PM)
i got a kitten trying to push my laptop off me so she can flopp on me lol

anna (Jan 27, 2010 8:24:25 PM)
priorities

momma (Jan 27, 2010 8:24:32 PM)
yea

anna (Jan 27, 2010 8:24:44 PM)
purrfect

paper (Jan 27, 2010 8:25:03 PM)
she is becoming pushy in her old age lol

matt-p (Jan 27, 2010 8:25:13 PM)
aawww

paper (Jan 27, 2010 8:25:21 PM)
it is carmen matty

anna (Jan 27, 2010 8:25:29 PM)
does she get along with the dog?

matt-p (Jan 27, 2010 8:25:44 PM)
aawww

paper (Jan 27, 2010 8:25:49 PM)
ya she sleeps with one of the dogs

matt-p (Jan 27, 2010 8:26:00 PM)
she is spoiled rotten

paper (Jan 27, 2010 8:26:14 PM)
they all like the dogs and the dogs like all of the cats

anna (Jan 27, 2010 8:26:22 PM)
lucky!

paper (Jan 27, 2010 8:26:35 PM)
they all grew up with each other

paper (Jan 27, 2010 8:26:39 PM)
thats the key

anna (Jan 27, 2010 8:26:41 PM)
no inter-species battles then

paper (Jan 27, 2010 8:26:47 PM)
nope never

anna (Jan 27, 2010 8:27:04 PM)
Momma, was Tooth Fairy good?

momma (Jan 27, 2010 8:27:14 PM)
it was ok

paper (Jan 27, 2010 8:27:23 PM)
our old dog grew up with our cat karrotte when he was still alive

anna (Jan 27, 2010 8:27:28 PM)
gotta luv The Rock

momma (Jan 27, 2010 8:27:36 PM)
wanted to see blindside but wasnt thier anymore

momma (Jan 27, 2010 8:27:46 PM)
yea i do like the rock

anna (Jan 27, 2010 8:27:49 PM)
I want to see that

paper (Jan 27, 2010 8:28:41 PM)
2 of our cats were actually born in this house marshy our dog watch them come into the world

anna (Jan 27, 2010 8:28:59 PM)
how many pets do you have Paper?

paper (Jan 27, 2010 8:29:08 PM)
5

anna (Jan 27, 2010 8:29:22 PM)
Momma--how many house dogs do you have? Any felines?

anna (Jan 27, 2010 8:29:48 PM)
I am lonely for a pet

paper (Jan 27, 2010 8:29:50 PM)
marshy tryed to take carmen out of the basket to lick her about 2 hrs after she was born

momma (Jan 27, 2010 8:30:09 PM)
no cats hubby doesnt like cat we have 2 dogs in the house

anna (Jan 27, 2010 8:30:12 PM)
bet mommy cat didn't let that happen

paper (Jan 27, 2010 8:30:17 PM)
no i am sorry that wasnt carmen that was orimay

paper (Jan 27, 2010 8:30:30 PM)
actually she did

matt-p (Jan 27, 2010 8:30:40 PM)
aawww

paper (Jan 27, 2010 8:30:52 PM)
it was hubby that took oriemay back to her mom

paper (Jan 27, 2010 8:30:59 PM)
it was so cute

paper (Jan 27, 2010 8:31:16 PM)
we had to put them in the dog cage so marshy would stop

anna (Jan 27, 2010 8:31:19 PM)
I don't care for cats around R as he cannot defend himself against them

momma (Jan 27, 2010 8:32:02 PM)
yea i dont like the shedding my dogs are bad enough

anna (Jan 27, 2010 8:32:08 PM)
R carries dog biscuits on his wc just in case we have to bribe some dog

paper (Jan 27, 2010 8:32:20 PM)
as long as u get a kitten and teach it the that isnt right i dont think u would have a problem anna

matt-p (Jan 27, 2010 8:32:21 PM)
lol

paper (Jan 27, 2010 8:32:33 PM)
lol

matt-p (Jan 27, 2010 8:33:45 PM)
a good lap kitty would be good

anna (Jan 27, 2010 8:33:58 PM)
R and I are meeting a 23 y/o with dmd for the first time tomorrow Momma--met them on PPMD

anna (Jan 27, 2010 8:34:22 PM)
meeting for lunch after his swimming lesson

paper (Jan 27, 2010 8:34:29 PM)
kitty are great cause they dont need to go out at 2 am

matt-p (Jan 27, 2010 8:34:43 PM)
lol

anna (Jan 27, 2010 8:34:56 PM)
R couldn't swim anymore at that age. he also goes to same doc and uses Niv with dental straw

paper (Jan 27, 2010 8:35:50 PM)
wish there was a place closer that i could go swimming

anna (Jan 27, 2010 8:36:05 PM)
but obviously isn't dependant as he is swimming--unless floats system on innertube next to him lol

paper (Jan 27, 2010 8:36:30 PM)
and a place that didnt only have steps to get down to the pool area

momma (Jan 27, 2010 8:36:41 PM)
o0h really ncool anna

momma (Jan 27, 2010 8:36:50 PM)
about meeting someone

anna (Jan 27, 2010 8:37:00 PM)
we had hoyer lift when R was in school and swam twice a week for his PE

anna (Jan 27, 2010 8:37:48 PM)
mounted on side of pool. we have Hoyer mount by our hot tub, but R doesn't like to go in it anymore

paper (Jan 27, 2010 8:37:56 PM)
the pool closest to us has a lift to get in but you cant get down to the pool unless you can do the 2 flights of stepps

matt-p (Jan 27, 2010 8:38:20 PM)
wow

anna (Jan 27, 2010 8:38:30 PM)
2 flights!!! don't they have to make it accessable by law?

paper (Jan 27, 2010 8:38:46 PM)
not in indiana if the building is old

anna (Jan 27, 2010 8:39:12 PM)
too bad--swimming is so good for most everyone

paper (Jan 27, 2010 8:39:15 PM)
they only have to make the upper portion accessable

paper (Jan 27, 2010 8:39:40 PM)
and it is a private club not public

matt-p (Jan 27, 2010 8:40:02 PM)
nite all

momma (Jan 27, 2010 8:40:03 PM)
so wht even have lift

momma (Jan 27, 2010 8:40:10 PM)
night matt

anna (Jan 27, 2010 8:40:10 PM)
Night Matt

paper (Jan 27, 2010 8:40:14 PM)
night matty

matt-p (Jan 27, 2010 8:40:28 PM)
(This user has left DigiChat)

paper (Jan 27, 2010 8:40:29 PM)
i have no clue i allways wondered about that

paper (Jan 27, 2010 8:40:45 PM)
unless it is for kids that can be carried down to the pool

paper (Jan 27, 2010 8:41:17 PM)
i have never actually seen anyone ever use the lift though

paper (Jan 27, 2010 8:41:58 PM)
they dont even let you use a face mask or flippers

anna (Jan 27, 2010 8:42:25 PM)
strict

paper (Jan 27, 2010 8:42:33 PM)
ya stupid strict

anna (Jan 27, 2010 8:43:13 PM)
ok, gotta go get dinner before aide gets here to shower R

paper (Jan 27, 2010 8:43:21 PM)
but the do have full bath and showers in locker rooms

anna (Jan 27, 2010 8:43:23 PM)
glad K is better Momma

momma (Jan 27, 2010 8:43:33 PM)
ok ty anna tc

momma (Jan 27, 2010 8:43:41 PM)
night anna and paper

paper (Jan 27, 2010 8:43:43 PM)
k anna night u 2

anna (Jan 27, 2010 8:43:44 PM)
full bath? bring your own bubblebath--BYOB

momma (Jan 27, 2010 8:43:51 PM)
lol

paper (Jan 27, 2010 8:43:51 PM)
ya

paper (Jan 27, 2010 8:43:53 PM)
lol

momma (Jan 27, 2010 8:43:54 PM)
(This user has left DigiChat)

anna (Jan 27, 2010 8:43:55 PM)
night

anna (Jan 27, 2010 8:43:57 PM)
(This user has left DigiChat)

paper (Jan 27, 2010 8:44:14 PM)
(This user has left DigiChat)