DMD Parent Chat

bridget (Jul 31, 2007 8:56:50 PM)
Is anyone there? I have never been in a chat room and don't know what to do?

anna (Jul 31, 2007 9:02:46 PM)
(This user has entered DMD Parent Chat)

anna (Jul 31, 2007 9:03:04 PM)
Hello?

anna (Jul 31, 2007 9:03:42 PM)
Did I miss Bridget?

bridget (Jul 31, 2007 9:04:39 PM)
(This user has left DigiChat)

candy1 (Jul 31, 2007 9:18:51 PM)
(This user has entered DMD Parent Chat)

anna (Jul 31, 2007 9:19:01 PM)
Hi Candy

Raybear (Jul 31, 2007 9:19:01 PM)
(This user has entered DMD Parent Chat)

anna (Jul 31, 2007 9:19:10 PM)
Hi Raybear

candy1 (Jul 31, 2007 9:19:10 PM)
hey

Raybear (Jul 31, 2007 9:19:14 PM)
hello there

Raybear (Jul 31, 2007 9:19:43 PM)
hi candy1 and hello anna! long time

anna (Jul 31, 2007 9:20:02 PM)
Yes, long time no Raybear.

candy1 (Jul 31, 2007 9:20:08 PM)
hi raybear

anna (Jul 31, 2007 9:20:14 PM)
right now as we speak

anna (Jul 31, 2007 9:20:38 PM)
opps, was also talking to someone on IM

Raybear (Jul 31, 2007 9:20:50 PM)
have I met candy? I have a 15 yr old with dmd

anna (Jul 31, 2007 9:20:54 PM)
not good at multi-tasking

Raybear (Jul 31, 2007 9:21:14 PM)
anna, you are the muti tasking queen!

candy1 (Jul 31, 2007 9:21:21 PM)
My son is 10

anna (Jul 31, 2007 9:21:58 PM)
what is new with both of you?

Raybear (Jul 31, 2007 9:22:10 PM)
i'm going nuts anna but not sure that's new lol

anna (Jul 31, 2007 9:22:46 PM)
we are all going nutz in various stages I guess

Raybear (Jul 31, 2007 9:23:08 PM)
this month has been a financial nightmare and it all swam up at once

Raybear (Jul 31, 2007 9:23:17 PM)
fortunately health has been good though

anna (Jul 31, 2007 9:23:41 PM)
Hubby retired now?

momma (Jul 31, 2007 9:23:46 PM)
(This user has entered DMD Parent Chat)

anna (Jul 31, 2007 9:23:53 PM)
Hi Momma

Raybear (Jul 31, 2007 9:23:55 PM)
technically yes.

momma (Jul 31, 2007 9:24:06 PM)
hello anna

anna (Jul 31, 2007 9:24:19 PM)
Hi Momma, how are "things"?

Raybear (Jul 31, 2007 9:24:35 PM)
short and simple...imagine social security giving you better service than retirment and retirement not sending you correct insurance information...so you have to write your legislature

candy1 (Jul 31, 2007 9:24:43 PM)
We went to a water park with our church. Andy had a great time, A teacher of his carried him up the waterslides so he could slide down.

Raybear (Jul 31, 2007 9:24:54 PM)
hi momma

Raybear (Jul 31, 2007 9:24:58 PM)
oh how fun candy!

momma (Jul 31, 2007 9:25:06 PM)
sleepless and a question for you ladies kent has been running a fever only at night?

momma (Jul 31, 2007 9:25:12 PM)
hi raybear

anna (Jul 31, 2007 9:25:13 PM)
Candy, did your son get to camp? Waterslides scare me.

candy1 (Jul 31, 2007 9:25:42 PM)
he is leaving this sun

Raybear (Jul 31, 2007 9:25:44 PM)
sorry to hear you're sleepless momma. I did read transcripts. Hope K is ok!

momma (Jul 31, 2007 9:26:09 PM)
yea

Raybear (Jul 31, 2007 9:26:52 PM)
is this his first camp candy?

anna (Jul 31, 2007 9:27:10 PM)
low-grade fever?

momma (Jul 31, 2007 9:27:19 PM)
hubby took him to dr on monday lungs are clear but they gave him z pack

Raybear (Jul 31, 2007 9:27:31 PM)
what is z pack?

momma (Jul 31, 2007 9:27:32 PM)
yea 101.6 -99.6

candy1 (Jul 31, 2007 9:27:51 PM)
this is his second time

momma (Jul 31, 2007 9:27:54 PM)
anitbiotic that you take for 5 days

Raybear (Jul 31, 2007 9:27:59 PM)
oh ty momma

anna (Jul 31, 2007 9:28:01 PM)
antibiotics--wide spectrum

Raybear (Jul 31, 2007 9:28:21 PM)
i never could get my son to go to camp and haven't pushed it. I bet he has a ton of fun!

momma (Jul 31, 2007 9:29:02 PM)
so did he have fun at camp candy?

candy1 (Jul 31, 2007 9:29:43 PM)
last week when i was on chat my son called 911 and said some bad words to the operater. Yes he loved it

momma (Jul 31, 2007 9:30:11 PM)
kent nuse to go to camp this was gonna be last year to go but has a vent and would of needed a nurse 24 hr and also he said it boring he just to old for camp i guess

momma (Jul 31, 2007 9:30:20 PM)
oops

Raybear (Jul 31, 2007 9:30:23 PM)
oh dear candy! I bet he got in trouble

anna (Jul 31, 2007 9:30:53 PM)
usually the older boys don't have as much fun as the younger unless they have some different activities

bridget (Jul 31, 2007 9:31:36 PM)
(This user has entered DMD Parent Chat)

anna (Jul 31, 2007 9:31:58 PM)
I cannot believe anyone on v-pap at night is considered "on the vent"--surely others use the v-pap at night at camp without a nurse??

candy1 (Jul 31, 2007 9:32:00 PM)
He sure did . I have to take things away. i have a hard time with physical punishment,

anna (Jul 31, 2007 9:32:10 PM)
Hi Bridget--missed you earlier

momma (Jul 31, 2007 9:32:28 PM)
no he went with vpap but because he uses vent in day

Raybear (Jul 31, 2007 9:32:42 PM)
taking things away at his age is probably effective

Raybear (Jul 31, 2007 9:32:49 PM)
hi bridget

anna (Jul 31, 2007 9:33:03 PM)
well, camp will have to learn to deal with it as more of our guys go on NIV at earlier ages

bridget (Jul 31, 2007 9:33:13 PM)
Hi, I have never chatted on line before so bear with me

momma (Jul 31, 2007 9:33:44 PM)
welcome bridget

momma (Jul 31, 2007 9:34:04 PM)
do you have a child with dmd?

anna (Jul 31, 2007 9:34:06 PM)
we all started one time--hopefully you will enjoy us

bridget (Jul 31, 2007 9:34:12 PM)
what is a vpap? It is nice to meet yaall

candy1 (Jul 31, 2007 9:34:21 PM)
hi bridget

anna (Jul 31, 2007 9:34:23 PM)
are you a DMD Mom? I am and my son is 26

bridget (Jul 31, 2007 9:34:36 PM)
I have a nephew that has Duchenes

momma (Jul 31, 2007 9:34:42 PM)
my son is 21

anna (Jul 31, 2007 9:34:51 PM)
v-pap is a type of bi-pap that helps our older guys breathe at night with a mask

bridget (Jul 31, 2007 9:34:55 PM)
Dalton is 11

anna (Jul 31, 2007 9:35:15 PM)
How is he doing?

candy1 (Jul 31, 2007 9:35:17 PM)
My son will be 11 in august

bridget (Jul 31, 2007 9:35:39 PM)
Dalton has not needed any of that yet He stopped walking this past year

momma (Jul 31, 2007 9:36:22 PM)
sorry to hear that he no longer walks my son was like 8-9 when he lost his walking

bridget (Jul 31, 2007 9:36:33 PM)
candy1 does your son have an aide at school? I have been Dalton's aide since 1st

bridget (Jul 31, 2007 9:38:00 PM)
He is going into 5th and Iam not for sure if I have my job yet this year. Dalton only weighs 52 lbs.

candy1 (Jul 31, 2007 9:38:37 PM)
he is in a orthepedic selfcontained class with a teacher and two aides .

Raybear (Jul 31, 2007 9:39:10 PM)
your school has orthopedic empairments only classrooms? wow

Raybear (Jul 31, 2007 9:39:21 PM)
impairment...oops

candy1 (Jul 31, 2007 9:40:06 PM)
Andy is going to middle school this year. No , He also has a learning disability

candy1 (Jul 31, 2007 9:40:40 PM)
Thats why its selfcontained

Raybear (Jul 31, 2007 9:40:56 PM)
if it is what he needs then that's great

Raybear (Jul 31, 2007 9:41:07 PM)
my son has LD issues too. we homeschool

candy1 (Jul 31, 2007 9:41:11 PM)
Andy is also very thin He weighs 60

bridget (Jul 31, 2007 9:41:50 PM)
Dalton is in a regular class. Can I ask was it hard to get your child a wheel chair? Medicaid denied Dalton's any so we have been using a borrowed one from my aunt. I am sorry about Andy.

anna (Jul 31, 2007 9:41:52 PM)
My son was tiny until he went into his wc--then too big--now too underweight again at age 26

momma (Jul 31, 2007 9:42:20 PM)
that what we did at first to bridget is borrow

Raybear (Jul 31, 2007 9:42:24 PM)
have you appealed their decision bridget? They should pay for one.

anna (Jul 31, 2007 9:42:45 PM)
If a dr writes a script for one Medicaid can not easily refuse him

candy1 (Jul 31, 2007 9:42:52 PM)
He is also adhd . He loves to talk. It took about 6 months to get chair

momma (Jul 31, 2007 9:43:18 PM)
kent didnt get his first power chair till about 12 but if i remember he did gat a manuel one when he was a lot younger

momma (Jul 31, 2007 9:44:02 PM)
that hubby insuraNCE PAID FOR

anna (Jul 31, 2007 9:44:17 PM)
if you take the dr's script for a wc to a wc vendor, they know how to write a letter to Medicaid

bridget (Jul 31, 2007 9:44:27 PM)
anna how do you lift him? Medicaid denied it because they did not like the way the prescription was written, and they want pictures of his home.

candy1 (Jul 31, 2007 9:44:32 PM)
medicaid paid for andys power chair and mda is getting him a manuel one

Raybear (Jul 31, 2007 9:45:27 PM)
pictures of his home?! uh...something sounds wrong there

anna (Jul 31, 2007 9:45:34 PM)
we have used a Hoyer lift for over 10 years. my hubby can still lift him, but I stopped at about 80 pounds. hubby doesn't live with us so Hoyer is my right hand

Raybear (Jul 31, 2007 9:46:35 PM)
what is often frustrating is how medicaid and coverage varies from state to state too.

bridget (Jul 31, 2007 9:46:48 PM)
My brother had ask the dr. for a manual one awhile back and he said Dalton was not ready for one so one long distance walks we used a stroller or wagon. They want pictures to make sure home is whellchair accessable

anna (Jul 31, 2007 9:47:19 PM)
What state is that in Bridget?

bridget (Jul 31, 2007 9:47:31 PM)
My brother is Dalton's dad, he raises Dalton and his sister by himself we live in Fl.

Raybear (Jul 31, 2007 9:47:33 PM)
but that doesn't seem like their business. he needs one for school if not for home too. and who's to say the home won't be modified after the wheelchair is got?

anna (Jul 31, 2007 9:48:05 PM)
I never heard of them wanting photos of homes

momma (Jul 31, 2007 9:48:25 PM)
me either

bridget (Jul 31, 2007 9:48:44 PM)
right, and yes one for school so he could have alot of indepence, photo of home I thought was kinda silly

Raybear (Jul 31, 2007 9:48:57 PM)
I'd be calling your state insurance board to find out if they can legally deny a claim based on home accessibility

anna (Jul 31, 2007 9:49:21 PM)
we had to move because our home was not wc accessible

bridget (Jul 31, 2007 9:49:34 PM)
I never thought of that thank you how do you find the #

bridget (Jul 31, 2007 9:49:52 PM)
anna how was it not accessible?

Raybear (Jul 31, 2007 9:49:58 PM)
and how do they define accessible anyway? a ramp in a door to get in?

Raybear (Jul 31, 2007 9:50:21 PM)
i'd google Florida state insurance board and see what you come up with

anna (Jul 31, 2007 9:50:26 PM)
old 2 story house with narrow halls and wrong angle to get into bathroom

Raybear (Jul 31, 2007 9:50:26 PM)
every state has one

Raybear (Jul 31, 2007 9:51:26 PM)
http://www.floridamedicaid.com/ might be good to start there

anna (Jul 31, 2007 9:52:02 PM)
the key is to write the perfect letter of neccesity--which the wc vendors know how to do

anna (Jul 31, 2007 9:52:20 PM)
dr's usually don't write the letter well

bridget (Jul 31, 2007 9:53:11 PM)
(This user has left DigiChat)

bridget (Jul 31, 2007 9:53:27 PM)
(This user has entered DMD Parent Chat)

Raybear (Jul 31, 2007 9:53:47 PM)
http://www.stateofflorida.com/Portal/DesktopDefault.aspx?tabid=17

Raybear (Jul 31, 2007 9:54:01 PM)
I'm sure you'd find it on that link. and maybe some other assistance too :)

anna (Jul 31, 2007 9:54:21 PM)
just another thing us parent's have to struggle with as if DMD is not stress enough

bridget (Jul 31, 2007 9:54:54 PM)
I know

candy1 (Jul 31, 2007 9:54:58 PM)
anna i ordered the book that your friends son wrote

anna (Jul 31, 2007 9:55:29 PM)
oh good--I did too. here is the link for others who want it.

candy1 (Jul 31, 2007 9:55:36 PM)
Cant wait to get it

anna (Jul 31, 2007 9:55:39 PM)
I just wanted to include a link to a book written by a young man who had DMD--it is a Christian-based book of affirmation of life dependant on others and God of course: http://www.amazon.com/Disabled-Christianity-Recognizing-Cultivating-Dependence/dp/059545481X/ref=sr_1_1/104-8744349-8662309?ie=UTF8&s=books&qid=1184818016&sr=8-1

Raybear (Jul 31, 2007 9:56:01 PM)
kewl anna. ty

anna (Jul 31, 2007 9:56:02 PM)
his Mom is hopefully going to be on the chat tomorrow

bridget (Jul 31, 2007 9:56:49 PM)
how often are yaall on here?

candy1 (Jul 31, 2007 9:57:38 PM)
I also ordered the book intensive care .have any of yall read it

anna (Jul 31, 2007 9:58:08 PM)
Yes, it was awful I thought. It was before dr's knew what to do for DMD.

anna (Jul 31, 2007 9:58:37 PM)
there is a movie based on "Intensive Care" with Liza Minelli too

candy1 (Jul 31, 2007 9:58:40 PM)
Maybe I shouldnt read it

Raybear (Jul 31, 2007 9:58:46 PM)
i won't read it then anna. our drs still don't know what to do ...sigh

candy1 (Jul 31, 2007 9:59:20 PM)
Is the movie called intensive care

anna (Jul 31, 2007 9:59:24 PM)
Intensive Care was what I read first after dx and it almost ruined me

Raybear (Jul 31, 2007 9:59:43 PM)
oooo that's not a good book then!

anna (Jul 31, 2007 9:59:44 PM)
No, let me find the name of that old movie.....

Raybear (Jul 31, 2007 10:00:33 PM)
i prefer to pretend everything is normal and will stay like it is forever....sometimes at least. until I have to do otherwise. ;0)

candy1 (Jul 31, 2007 10:01:45 PM)
I just take one day at a time and not worry about the future

anna (Jul 31, 2007 10:01:55 PM)
1985, "A Time to Live" based on Mary-Lou Weisman"s story about her son Peter

Raybear (Jul 31, 2007 10:02:11 PM)
that's the way to journey through this candy.

Raybear (Jul 31, 2007 10:02:33 PM)
at times you prepare for the next step or stage...furture....but can't dwell on things everyday

Raybear (Jul 31, 2007 10:02:49 PM)
and can only sorta prepare since we never know.

candy1 (Jul 31, 2007 10:02:51 PM)
have you seen the movie anna

anna (Jul 31, 2007 10:04:13 PM)
yes--very sad movie--not upbeat like" Rory O'Shea Was Here"

anna (Jul 31, 2007 10:04:28 PM)
although Rory is hard to watch too!

candy1 (Jul 31, 2007 10:04:34 PM)
the hardest thing is that the weaker my son gets the more angry he gets

bridget (Jul 31, 2007 10:04:59 PM)
caney1 how old is your son again?

Raybear (Jul 31, 2007 10:05:03 PM)
and even Rory O'Shea was sad!

candy1 (Jul 31, 2007 10:05:17 PM)
He is 11

anna (Jul 31, 2007 10:05:21 PM)
I need to stay away from sad movies I guess

anna (Jul 31, 2007 10:05:49 PM)
esp about dmd--although "Darius Goes West" should be good

Raybear (Jul 31, 2007 10:06:14 PM)
will you watch it first and report back? lol I'm chicken

bridget (Jul 31, 2007 10:06:18 PM)
It is hard for them to understand.

momma (Jul 31, 2007 10:06:39 PM)
i thought that story was awesome anna what a great buch of friends he has darius

Raybear (Jul 31, 2007 10:06:51 PM)
losing walking wasn't tooo taumatic for my son (thankfully) but his arms is another matter.

bridget (Jul 31, 2007 10:07:03 PM)
I don't like to watch sad movies

anna (Jul 31, 2007 10:07:10 PM)
anger issues need to be dealt with carefully

candy1 (Jul 31, 2007 10:07:20 PM)
Yes i heard about that movie .do you know when it will be available

momma (Jul 31, 2007 10:07:41 PM)
no i dont

Raybear (Jul 31, 2007 10:08:09 PM)
i'm off to make dinner and go for a long walk afterwards. summer is soo wonderful in the evening

anna (Jul 31, 2007 10:08:15 PM)
http://youtube.com/watch?v=DFt3_s1WnS4

Raybear (Jul 31, 2007 10:08:17 PM)
take care all.

momma (Jul 31, 2007 10:08:25 PM)
night raybear

Raybear (Jul 31, 2007 10:08:30 PM)
(This user has left DigiChat)

anna (Jul 31, 2007 10:08:31 PM)
we did that walk before dinner

candy1 (Jul 31, 2007 10:08:59 PM)
My son has problems with anger but he will be getting conceling at school this year

momma (Jul 31, 2007 10:09:02 PM)
i took a little nap and my daughter came over a fix supper:)

anna (Jul 31, 2007 10:09:45 PM)
that was nice Momma--nights are hard for you and K

bridget (Jul 31, 2007 10:09:49 PM)
thank yaall and have a nice night.

momma (Jul 31, 2007 10:09:54 PM)
yea

momma (Jul 31, 2007 10:10:03 PM)
night bridget

candy1 (Jul 31, 2007 10:10:11 PM)
night brigette

bridget (Jul 31, 2007 10:10:23 PM)
(This user has left DigiChat)

anna (Jul 31, 2007 10:10:37 PM)
our son's need to see how older dmd guys handle things

momma (Jul 31, 2007 10:12:00 PM)
well i better go hubby giving kent a shower i have to get bed ready and pills ect.

candy1 (Jul 31, 2007 10:12:13 PM)
I think campm is a good way to prepare my son. He can see how others cope

anna (Jul 31, 2007 10:12:16 PM)
Ok, CU tomorrow night Momma

anna (Jul 31, 2007 10:12:25 PM)
I agree Candy

momma (Jul 31, 2007 10:12:29 PM)
ok night all

momma (Jul 31, 2007 10:12:37 PM)
(This user has left DigiChat)

anna (Jul 31, 2007 10:12:46 PM)
R's aide is not here!

anna (Jul 31, 2007 10:13:01 PM)
he was an hour late last time also.....

candy1 (Jul 31, 2007 10:13:10 PM)
I allways tell him that he is lucky there are others worse off

candy1 (Jul 31, 2007 10:13:36 PM)
Good talking to you

anna (Jul 31, 2007 10:13:47 PM)
yes, but we can understand their disappointment that this happened to them

anna (Jul 31, 2007 10:14:02 PM)
ok Candy, talk to you soon I hope

anna (Jul 31, 2007 10:14:21 PM)
as Moms we would take it on ourselves if we could

candy1 (Jul 31, 2007 10:14:44 PM)
yes i would

candy1 (Jul 31, 2007 10:15:18 PM)
I just give him all the love i can

candy1 (Jul 31, 2007 10:15:39 PM)
night anna

anna (Jul 31, 2007 10:15:41 PM)
that is what they need

anna (Jul 31, 2007 10:15:50 PM)
Goodnight Candy. tc

candy1 (Jul 31, 2007 10:16:01 PM)
It is good medicine

anna (Jul 31, 2007 10:16:22 PM)
(This user has left DigiChat)

candy1 (Jul 31, 2007 10:16:27 PM)
(This user has left DigiChat)