Parents of Young Adults with DMD

anna (Jul 2, 2008 9:07:31 PM)
(This user has entered Parents of Young Adults with DMD)

momma (Jul 2, 2008 9:07:45 PM)
hello anna

anna (Jul 2, 2008 9:07:54 PM)
Hi Momma

momma (Jul 2, 2008 9:08:08 PM)
took me awhile to get on for some reason

anna (Jul 2, 2008 9:08:11 PM)
we just rolled in. big thunderstorm just over.

momma (Jul 2, 2008 9:08:20 PM)
here too

momma (Jul 2, 2008 9:08:29 PM)
but most went south of us

anna (Jul 2, 2008 9:09:23 PM)
everything ok?

momma (Jul 2, 2008 9:09:28 PM)
yea

momma (Jul 2, 2008 9:10:02 PM)
how about your way?

anna (Jul 2, 2008 9:10:13 PM)
nothing is being done because of holiday towards new aides, etc.

anna (Jul 2, 2008 9:10:38 PM)
going to pulmonologist next week

momma (Jul 2, 2008 9:10:44 PM)
oh yea i guess it is a holiday weekend lol

momma (Jul 2, 2008 9:10:56 PM)
any concerns?

anna (Jul 2, 2008 9:11:00 PM)
R thinks he has less gas after turning epap down

momma (Jul 2, 2008 9:11:14 PM)
great

anna (Jul 2, 2008 9:11:21 PM)
otherwise, he doesn't really have to go in

anna (Jul 2, 2008 9:11:32 PM)
just hadn't been for a year

anna (Jul 2, 2008 9:11:56 PM)
last night I broke one of the links on his support arm for breathing tube

momma (Jul 2, 2008 9:12:00 PM)
thats good kent plum likes to see him every 6 monthes

momma (Jul 2, 2008 9:12:22 PM)
its fixable thou right?

anna (Jul 2, 2008 9:12:29 PM)
but, we have the tool and extra links to fix it

momma (Jul 2, 2008 9:12:42 PM)
fewww!

anna (Jul 2, 2008 9:13:43 PM)
we have done this before. the first time we didn't have the tool, so RT told us to stand by elevator until we spotted someone who looked strong and have them force it back together

anna (Jul 2, 2008 9:14:39 PM)
it takes a lot of strength to snap them off/on

anna (Jul 2, 2008 9:14:53 PM)
but with the tool it is easy

momma (Jul 2, 2008 9:15:09 PM)
kent mouth piece is held up by microphone stand so it usually easy fix

anna (Jul 2, 2008 9:15:55 PM)
we have those plastic pop-its sometimes called elephant arms

momma (Jul 2, 2008 9:16:35 PM)
been busy today trying to keep kent clean and dry today things are working again if ya know what i mean im whipped!

momma (Jul 2, 2008 9:17:14 PM)
poor kent tried too but say he feels much better :)

anna (Jul 2, 2008 9:18:03 PM)
that is not a fun thing to deal with

momma (Jul 2, 2008 9:18:16 PM)
nah but glad he feels better

anna (Jul 2, 2008 9:18:27 PM)
what did doc say would eventually happen?

momma (Jul 2, 2008 9:18:35 PM)
well

momma (Jul 2, 2008 9:20:00 PM)
hasnt yet but im thinking god forbidd another bag

anna (Jul 2, 2008 9:20:10 PM)
this is probably a lesser known complication we don't hear too much about

anna (Jul 2, 2008 9:20:38 PM)
or is it more common than I know?

momma (Jul 2, 2008 9:21:09 PM)
well as i said dr claims kent has visceral dstrophy ?

anna (Jul 2, 2008 9:21:30 PM)
I remember distinctly asking doc if there would be stomach/eating issues and he said "no". So wrong!!

momma (Jul 2, 2008 9:21:37 PM)
nut i have herd of a few other boy with digestion issues

anna (Jul 2, 2008 9:22:18 PM)
R has just had swallowing issues so far. sometimes they cause him to aspirate.

momma (Jul 2, 2008 9:22:27 PM)
well they say that about bladder but i think doc is wrong about that

momma (Jul 2, 2008 9:23:09 PM)
kent doesnt really have swallowing issues or has he ever aspirated so dont know ?

anna (Jul 2, 2008 9:23:12 PM)
me too from what I have heard

anna (Jul 2, 2008 9:23:28 PM)
well, he is lucky for that

momma (Jul 2, 2008 9:23:39 PM)
yea

anna (Jul 2, 2008 9:24:07 PM)
the Cough Assist has saved him more than once

momma (Jul 2, 2008 9:24:24 PM)
cough assist is great

momma (Jul 2, 2008 9:24:48 PM)
kent uses his everyday morning and night

anna (Jul 2, 2008 9:25:07 PM)
R only uses it when neccessary

anna (Jul 2, 2008 9:25:24 PM)
how is that woman doing you were telling about NIV?

liisau (Jul 2, 2008 9:25:31 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Jul 2, 2008 9:25:38 PM)
Hi Liisa

momma (Jul 2, 2008 9:25:42 PM)
havent herd from her

liisau (Jul 2, 2008 9:25:43 PM)
hi again

momma (Jul 2, 2008 9:25:45 PM)
hi lisa

liisau (Jul 2, 2008 9:26:04 PM)
how are you both?

momma (Jul 2, 2008 9:26:08 PM)
not sure her son wants intervention? or mabey just scared?

momma (Jul 2, 2008 9:26:13 PM)
good here

anna (Jul 2, 2008 9:26:18 PM)
I am sending info about NIV to a California woman

liisau (Jul 2, 2008 9:26:34 PM)
oh....talking about the woman with the son who needs to be trach'd?

anna (Jul 2, 2008 9:26:53 PM)
not sure if this is same one??

momma (Jul 2, 2008 9:26:59 PM)
a pen pal

anna (Jul 2, 2008 9:27:28 PM)
Sunney gave this woman my e-addy--they live in Ca

momma (Jul 2, 2008 9:27:44 PM)
i see

anna (Jul 2, 2008 9:27:54 PM)
she is also having problems with the bi-pap masks

anna (Jul 2, 2008 9:28:19 PM)
it is hard to find a good one to fit each particular face shape

anna (Jul 2, 2008 9:28:26 PM)
you just have to try a lot of them

liisau (Jul 2, 2008 9:28:30 PM)
anna...completely off topic.... sorry you all lost the sonics

anna (Jul 2, 2008 9:29:08 PM)
frankly, we are not very interested in sports, but some were upset

anna (Jul 2, 2008 9:29:29 PM)
we have those Mariners lol--what a bad season they are having I guess

liisau (Jul 2, 2008 9:29:31 PM)
understand. my hubby is long time fan

liisau (Jul 2, 2008 9:29:52 PM)
yeah...swept by the worst time over here recently....not goood

anna (Jul 2, 2008 9:30:04 PM)
we usually go to 1 Mariner's game a year

liisau (Jul 2, 2008 9:30:17 PM)
we try to catch them out here

liisau (Jul 2, 2008 9:30:32 PM)
please feel free to get back to topic

anna (Jul 2, 2008 9:30:41 PM)
np.

anna (Jul 2, 2008 9:31:13 PM)
I just heard res-med is going to discontinue the "Mirage"ask that R likes

liisau (Jul 2, 2008 9:31:39 PM)
how often do you go thru masks?

anna (Jul 2, 2008 9:31:41 PM)
whatever I like, be it silverwear or shoes or a lipstick, they immediately discontinue it seems

momma (Jul 2, 2008 9:31:49 PM)
is it nasal pillows anna

anna (Jul 2, 2008 9:32:07 PM)
no, although he uses nasal pillows sometimes as an alternative

momma (Jul 2, 2008 9:32:16 PM)
that what kent uses

liisau (Jul 2, 2008 9:32:27 PM)
now forgive me, but nasal pillows sounds kinda funny

momma (Jul 2, 2008 9:32:43 PM)
the head gear once a yr but nasal pillows for it 2 a month

anna (Jul 2, 2008 9:32:47 PM)
mirage vista

anna (Jul 2, 2008 9:33:15 PM)
sometimes the nose gets sore so you use lika a padded nasal cannula instead of just nose mask

liisau (Jul 2, 2008 9:33:30 PM)
ah...gotchya

anna (Jul 2, 2008 9:33:49 PM)
we can have all we want, but usually one lasts at least 6 months

liisau (Jul 2, 2008 9:34:01 PM)
stocking up then?

anna (Jul 2, 2008 9:34:08 PM)
we should

momma (Jul 2, 2008 9:34:32 PM)
you ll have to go to resmed web site you can see for your self easier than describing :0)

liisau (Jul 2, 2008 9:34:34 PM)
well, good idea if they are not going to break the bank

liisau (Jul 2, 2008 9:34:41 PM)
oki

anna (Jul 2, 2008 9:34:49 PM)
they are somewhat expensive

liisau (Jul 2, 2008 9:34:55 PM)
=(

anna (Jul 2, 2008 9:35:12 PM)
we have a few types we haven't tried yet in R's closet

anna (Jul 2, 2008 9:35:32 PM)
everytime the RT sees a new one they want R to try it out

momma (Jul 2, 2008 9:35:34 PM)
yea hubbie uses cpap and he has to pat 20% and its $55.00

momma (Jul 2, 2008 9:35:46 PM)
pay*

anna (Jul 2, 2008 9:36:03 PM)
that is one of the cheaper ones then

liisau (Jul 2, 2008 9:36:17 PM)
geez.....how do you all not go broke?

anna (Jul 2, 2008 9:36:30 PM)
all covered by Medicaid

momma (Jul 2, 2008 9:36:30 PM)
thats just for mask and tubing

vdoman (Jul 2, 2008 9:36:46 PM)
(This user has entered Parents of Young Adults with DMD)

momma (Jul 2, 2008 9:36:52 PM)
kent s is 100% pd by ins and medicade

vdoman (Jul 2, 2008 9:36:52 PM)
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anna (Jul 2, 2008 9:37:10 PM)
vdoman got lost from Myotonic chat

anna (Jul 2, 2008 9:38:37 PM)
before we knew R had MD my hubby built him his own really gentle steps into the house--when he could no longer do those we were wondering what was going on

liisau (Jul 2, 2008 9:38:44 PM)
does medicade restrict the purchases though? Like my health insurance required us to have our older non-dmd son reject all these reflux meds before they would approve nexium

anna (Jul 2, 2008 9:39:40 PM)
we had a hard time getting Medicade to buy R's new wc after he reached 18--before that we had private insurance that was good

momma (Jul 2, 2008 9:40:16 PM)
we still have private ins plus medicade

anna (Jul 2, 2008 9:40:19 PM)
Medicaid is really good as long as an MD writes a RX for whatever it is--bath cahir or whatever

anna (Jul 2, 2008 9:40:36 PM)
we just have Medicaid and it has been adequate

momma (Jul 2, 2008 9:40:45 PM)
medicade here is pretty tough theses days

anna (Jul 2, 2008 9:41:15 PM)
yes, since R got his last chair they are supposedly only wanting bare basic chairs

liisau (Jul 2, 2008 9:41:15 PM)
$ all in political campaigns and irq =(

anna (Jul 2, 2008 9:41:48 PM)
but, we found out you can get "extras" if you offer to pay for them

anna (Jul 2, 2008 9:42:21 PM)
we got extras for R's last chair and they never billed us for them

momma (Jul 2, 2008 9:42:46 PM)
kent due for new chair next year

momma (Jul 2, 2008 9:43:12 PM)
thats good anna

anna (Jul 2, 2008 9:43:35 PM)
yes, but you do have to prove it would be best/cheaper to get new if chair is 5 years old--have to submit what it would cost to fix versus cost of new

liisau (Jul 2, 2008 9:44:00 PM)
is the wear and tear the reason for replacing or they have a cycle of years to replacements

anna (Jul 2, 2008 9:44:06 PM)
we almost had to go to a hearing to get R's first Medicaid chair

anna (Jul 2, 2008 9:44:39 PM)
it is usually a case of they have made "improvements" and don't have the parts for the older chirs

momma (Jul 2, 2008 9:44:47 PM)
they figure after the chair is 5 yrs old its farther ahead to get new chair

anna (Jul 2, 2008 9:45:19 PM)
we still had to jump thru hoops and R's chair was 8 years old

anna (Jul 2, 2008 9:45:42 PM)
we had to prove he needed a wc

momma (Jul 2, 2008 9:46:09 PM)
we didnt have to much trouble it took awhile but thats all

anna (Jul 2, 2008 9:46:10 PM)
and crawl under the chair and get serial numbers, etc.

anna (Jul 2, 2008 9:46:35 PM)
as if we were faking the need for a wc!!

momma (Jul 2, 2008 9:47:03 PM)
yea didnt you dream of having a son in a wheel chair dah !

anna (Jul 2, 2008 9:47:18 PM)
the wear n tear is worst when boys are young! they like to go odd places that older guys want to avoid

liisau (Jul 2, 2008 9:47:58 PM)
we of course know that R is faking it! how crazy are they!!!!

anna (Jul 2, 2008 9:48:01 PM)
R's friend drove off a dock in his. R tried the deck stairs and got suspended upside down

momma (Jul 2, 2008 9:48:19 PM)
true anna but we live in the county no side wallks here so need a tuff chair

momma (Jul 2, 2008 9:48:31 PM)
omg anna

anna (Jul 2, 2008 9:49:07 PM)
I always remove R's seatbelts when he is on a dock

anna (Jul 2, 2008 9:49:22 PM)
I think he might float, but the chair wouldn't

momma (Jul 2, 2008 9:49:30 PM)
i remember when kent had manuel chair his siter thought she'd teach him to go down the ramp wrong answer blood nose and all

anna (Jul 2, 2008 9:50:07 PM)
just you wait Liisa! is your son a dare-devil?

anna (Jul 2, 2008 9:50:27 PM)
boys will be boys and all that

momma (Jul 2, 2008 9:50:28 PM)
doesa your son have siblings lisa

liisau (Jul 2, 2008 9:51:18 PM)
son is a dare-devil

liisau (Jul 2, 2008 9:51:28 PM)
older son is 5 and not dmd

liisau (Jul 2, 2008 9:51:46 PM)
C is very spirited and adventurous

anna (Jul 2, 2008 9:52:01 PM)
thank goodness the power chairs are built tough

momma (Jul 2, 2008 9:52:10 PM)
yeah for sure

anna (Jul 2, 2008 9:52:34 PM)
R still loves an icy driveway to spin on

momma (Jul 2, 2008 9:52:43 PM)
kent too

liisau (Jul 2, 2008 9:52:58 PM)
yeah, I'm sure that C will be a dare devil on the scooters/wc

momma (Jul 2, 2008 9:53:30 PM)
they find some way to be mischiveous

anna (Jul 2, 2008 9:53:40 PM)
once, on campus, R skidded into a snowbank

liisau (Jul 2, 2008 9:53:53 PM)
lol

anna (Jul 2, 2008 9:54:04 PM)
I wasn't around but someone else helped him

anna (Jul 2, 2008 9:54:13 PM)
a way to make friends

momma (Jul 2, 2008 9:54:48 PM)
kent got stuck in mudd oneime his grand pa treathen to call tow truck lol

anna (Jul 2, 2008 9:54:48 PM)
on the same campus our friend who doesn't see too well drove down some stairs mistaking them for the ramp nearby

anna (Jul 2, 2008 9:55:25 PM)
our disability club lobbyied for a red stripe in front of all the stairs

momma (Jul 2, 2008 9:56:30 PM)
well it really stroming now im gonna shut down computer ttyl

anna (Jul 2, 2008 9:56:42 PM)
hubby found me a laptop no one wanted(free), so R is trying to fix it up for me. Night Momma

momma (Jul 2, 2008 9:56:49 PM)
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anna (Jul 2, 2008 9:57:08 PM)
then he won't be patrolling around when I use his (like he is doing now)

liisau (Jul 2, 2008 9:57:13 PM)
it's nice to have a handy computer son around

liisau (Jul 2, 2008 9:57:19 PM)
LOL

liisau (Jul 2, 2008 9:57:26 PM)
tell him we say hi!!!

anna (Jul 2, 2008 9:57:39 PM)
yes, but I still have to do all the hands-on stuff which makes me nervous

anna (Jul 2, 2008 9:58:03 PM)
but, haven't blown up anything yet

liisau (Jul 2, 2008 9:58:09 PM)
btw....it's nice for him to be needed by you for things like this

liisau (Jul 2, 2008 9:58:20 PM)
gives him a chance to help you for everything you've done for him

anna (Jul 2, 2008 9:58:36 PM)
I call him "the brains of the outfit"

anna (Jul 2, 2008 9:58:48 PM)
he calls it, I do it

liisau (Jul 2, 2008 9:58:54 PM)
lol

anna (Jul 2, 2008 9:59:00 PM)
you are right--our guys need to feel needed

liisau (Jul 2, 2008 9:59:03 PM)
sounds like a great partnership

liisau (Jul 2, 2008 9:59:21 PM)
you know...

anna (Jul 2, 2008 9:59:44 PM)
well, you should have heard my complaining last night when he had to explain how to take the arm off his chair and fix the support arm for the breathing tube

liisau (Jul 2, 2008 10:00:24 PM)
I think C is starting to not want my hubby or his older brother from being so close to me

liisau (Jul 2, 2008 10:00:36 PM)
oh boy. fixed in the end?

anna (Jul 2, 2008 10:01:01 PM)
yes, it is a fine road to make sure they are not too dependant on any one person.

liisau (Jul 2, 2008 10:01:23 PM)
about 3 am every nite, C is hollering about something in his sleep or dreams and won't settle down without me

anna (Jul 2, 2008 10:01:28 PM)
yes, it is fixed becasue we sent for the "tool" needed and extra links

liisau (Jul 2, 2008 10:01:31 PM)
We do try to push the independence

anna (Jul 2, 2008 10:01:49 PM)
it is hard sometimes

liisau (Jul 2, 2008 10:01:57 PM)
sorry, anna.... have to run. C wet the bed

liisau (Jul 2, 2008 10:02:00 PM)
night.

anna (Jul 2, 2008 10:02:08 PM)
Night!!

liisau (Jul 2, 2008 10:02:09 PM)
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anna (Jul 2, 2008 10:02:20 PM)
over and out

anna (Jul 2, 2008 10:02:25 PM)
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