Parents of Young Adults with DMD
jd-tractor (Dec 20, 2006 7:56:12 PM)
jd-tractor (Dec 20, 2006 7:56:28 PM)
(This user has moved to BMD Chat Group)
momma (Dec 20, 2006 7:58:43 PM)
(This user has entered Parents of Young Adults with DMD)
brucesmom (Dec 20, 2006 8:03:38 PM)
(This user has entered Parents of Young Adults with DMD)
brucesmom (Dec 20, 2006 8:03:53 PM)
hi diane
momma (Dec 20, 2006 8:04:01 PM)
hi donna
Raybear (Dec 20, 2006 8:04:01 PM)
(This user has entered Parents of Young Adults with DMD)
momma (Dec 20, 2006 8:04:07 PM)
hi raybear
Raybear (Dec 20, 2006 8:04:14 PM)
hi momma and brucesmom
Raybear (Dec 20, 2006 8:04:36 PM)
how r u bruces?
brucesmom (Dec 20, 2006 8:04:45 PM)
good
momma (Dec 20, 2006 8:04:48 PM)
if i cut out in a little bit gotta help with kents shower
brucesmom (Dec 20, 2006 8:04:54 PM)
ok
Raybear (Dec 20, 2006 8:04:57 PM)
ok momma
Raybear (Dec 20, 2006 8:05:23 PM)
my condolances to your family brucesmom. good to see ya
brucesmom (Dec 20, 2006 8:05:30 PM)
thank you
momma (Dec 20, 2006 8:05:31 PM)
don't know hiw much help i'll be this after noon my back started hurting me ?
Raybear (Dec 20, 2006 8:05:43 PM)
oh no momma
brucesmom (Dec 20, 2006 8:05:43 PM)
oh boy
momma (Dec 20, 2006 8:05:57 PM)
only hurts when i stand been using heating pad
Raybear (Dec 20, 2006 8:06:11 PM)
ooo ouch
brucesmom (Dec 20, 2006 8:06:12 PM)
did you pull something
momma (Dec 20, 2006 8:06:17 PM)
brb
brucesmom (Dec 20, 2006 8:06:20 PM)
ok
Raybear (Dec 20, 2006 8:06:21 PM)
k
Raybear (Dec 20, 2006 8:06:30 PM)
how is the weather your way bruces?
brucesmom (Dec 20, 2006 8:06:32 PM)
raybear are you ready for xmas
brucesmom (Dec 20, 2006 8:06:36 PM)
nice
Raybear (Dec 20, 2006 8:06:37 PM)
yeah pretty much
brucesmom (Dec 20, 2006 8:06:39 PM)
no snow
Raybear (Dec 20, 2006 8:06:50 PM)
windy here, no snow
Raybear (Dec 20, 2006 8:06:56 PM)
is not snow unusual for your area?
brucesmom (Dec 20, 2006 8:07:07 PM)
a little cold here but not too bad
brucesmom (Dec 20, 2006 8:07:14 PM)
yes
Raybear (Dec 20, 2006 8:07:16 PM)
you have plans for Christmas?
brucesmom (Dec 20, 2006 8:07:39 PM)
xmas eve going to mother in laws and xmas day so far staying home with hubby
Raybear (Dec 20, 2006 8:07:44 PM)
ah
brucesmom (Dec 20, 2006 8:08:09 PM)
it is going to seem strange becasue we have had xmas eve here for the last four years
anna (Dec 20, 2006 8:08:26 PM)
(This user has entered Parents of Young Adults with DMD)
brucesmom (Dec 20, 2006 8:08:28 PM)
because of bruce not be able to go anywhere
Raybear (Dec 20, 2006 8:08:48 PM)
it will be way different I bet. I'll be keeping you in our thoughts.
brucesmom (Dec 20, 2006 8:08:57 PM)
thank you
anna (Dec 20, 2006 8:08:57 PM)
Hi
brucesmom (Dec 20, 2006 8:08:59 PM)
hi
Raybear (Dec 20, 2006 8:09:01 PM)
hi anna! how did you guys weather the big storm?
jd-tractor (Dec 20, 2006 8:09:05 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Dec 20, 2006 8:09:08 PM)
badly
brucesmom (Dec 20, 2006 8:09:14 PM)
hi jd
Raybear (Dec 20, 2006 8:09:17 PM)
hi jd
ken-t (Dec 20, 2006 8:09:33 PM)
(This user has entered Parents of Young Adults with DMD)
jd-tractor (Dec 20, 2006 8:09:34 PM)
hello folks, just dropped in to say hi
Raybear (Dec 20, 2006 8:09:36 PM)
uh oh anna! r u "home" or someplace else? do tell
anna (Dec 20, 2006 8:09:47 PM)
Hi jd and ken
Raybear (Dec 20, 2006 8:09:47 PM)
always good to see ya jd :)
ken-t (Dec 20, 2006 8:09:52 PM)
hi anna
Raybear (Dec 20, 2006 8:09:57 PM)
hi ken-t
jd-tractor (Dec 20, 2006 8:10:05 PM)
nobody in the becker chat yet tonight
ken-t (Dec 20, 2006 8:10:14 PM)
hi raybear, how have you been dong?
anna (Dec 20, 2006 8:10:25 PM)
power came back on yesterday so we were able to return to our Seattle-area apt--another windstorm tonite however
ken-t (Dec 20, 2006 8:10:25 PM)
doing
Raybear (Dec 20, 2006 8:10:26 PM)
good here. pulmo appt was interesting
Raybear (Dec 20, 2006 8:10:42 PM)
windy here anna, hope you guys don't end up without power again!
ken-t (Dec 20, 2006 8:10:45 PM)
good to hear
anna (Dec 20, 2006 8:10:51 PM)
tell us about it Raybear
ken-t (Dec 20, 2006 8:11:00 PM)
anna we have been worried about you and roy, glad to hear you are ok
Raybear (Dec 20, 2006 8:11:05 PM)
pulmo...the infamous Dr. O....
anna (Dec 20, 2006 8:11:21 PM)
yes, we had a warm place to go. others tried to keep warm here, and some died
ken-t (Dec 20, 2006 8:11:25 PM)
is everything ok raybear?
jd-tractor (Dec 20, 2006 8:11:26 PM)
boy ,you guys are really having a time with the weather anna,
Raybear (Dec 20, 2006 8:11:40 PM)
said the "good news is he doesn't have apnea, his O2 levels stayed in the high 90's with one drop to 95...
Raybear (Dec 20, 2006 8:11:52 PM)
but his heart rate went up three or four times to 135
anna (Dec 20, 2006 8:11:54 PM)
greater than 93 is okay
rayla (Dec 20, 2006 8:12:02 PM)
(This user has entered Parents of Young Adults with DMD)
Raybear (Dec 20, 2006 8:12:07 PM)
so Holter monitor test is what he's ordered for tomorrow
Raybear (Dec 20, 2006 8:12:23 PM)
hi rayla!
rayla (Dec 20, 2006 8:12:37 PM)
HI
anna (Dec 20, 2006 8:12:43 PM)
oh yes, wired all over
ken-t (Dec 20, 2006 8:12:52 PM)
oh ok, well i hope you do ok with the test raybear
brucesmom (Dec 20, 2006 8:12:52 PM)
(This user has left DigiChat)
anna (Dec 20, 2006 8:12:56 PM)
Hi Rayla
Raybear (Dec 20, 2006 8:13:09 PM)
I figured at least the guy is doing something and couldn't simply poopoo me like he thought he could...>>LOL not to worried though. seems high heart rate is pretty 'normal' for kids with dmd
anna (Dec 20, 2006 8:13:21 PM)
it is fun to take the sticky pasties off
rayla (Dec 20, 2006 8:13:24 PM)
How is everybody?
Raybear (Dec 20, 2006 8:13:37 PM)
the glue in the hair was the worst! LOL
ken-t (Dec 20, 2006 8:13:46 PM)
baking cookies here, or the wife and girl are......brb
Raybear (Dec 20, 2006 8:13:53 PM)
yummy!
brucesmom (Dec 20, 2006 8:13:57 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Dec 20, 2006 8:13:58 PM)
and teens have a higher HR than adults too
Raybear (Dec 20, 2006 8:14:02 PM)
hi rayla. good here
brucesmom (Dec 20, 2006 8:14:18 PM)
lost my connection for a minute
Raybear (Dec 20, 2006 8:14:24 PM)
while sleeping though? he usually runs around 75
Raybear (Dec 20, 2006 8:14:29 PM)
wb brucesmom
brucesmom (Dec 20, 2006 8:14:33 PM)
thanks
anna (Dec 20, 2006 8:14:37 PM)
I just rolled in from R's appointment and grocery--so need to take a few to organize. brb
brucesmom (Dec 20, 2006 8:14:44 PM)
ok
ken-t (Dec 20, 2006 8:14:53 PM)
ok, im back.........and yes raybear, ya gotta just love the glue
anna (Dec 20, 2006 8:14:54 PM)
must have dreamed he was running free
Raybear (Dec 20, 2006 8:14:54 PM)
how was R's appt?
brucesmom (Dec 20, 2006 8:14:56 PM)
anna did you receive the poem i sent
Raybear (Dec 20, 2006 8:15:14 PM)
think we'll attempt cookies tomorrow
anna (Dec 20, 2006 8:15:18 PM)
I don't know Donna--as of this morning, no
greg (Dec 20, 2006 8:15:33 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Dec 20, 2006 8:15:36 PM)
R is okay cardiologist says no worse
anna (Dec 20, 2006 8:15:47 PM)
brb
Raybear (Dec 20, 2006 8:15:59 PM)
we had cardio Oct and they said all was ok. i was a bit surprised with the night rate lol
brucesmom (Dec 20, 2006 8:16:01 PM)
thats good anna
Raybear (Dec 20, 2006 8:16:09 PM)
glad R is ok :)
ken-t (Dec 20, 2006 8:16:10 PM)
(This user has left DigiChat)
anna (Dec 20, 2006 8:16:30 PM)
did not get it Donna
anna (Dec 20, 2006 8:16:48 PM)
Hi Greg
jd-tractor (Dec 20, 2006 8:16:49 PM)
is this the beckers greg
brucesmom (Dec 20, 2006 8:16:55 PM)
i sent it around 4 pm
greg (Dec 20, 2006 8:17:14 PM)
yes it is jd
greg (Dec 20, 2006 8:17:27 PM)
Hi anna
anna (Dec 20, 2006 8:17:31 PM)
Donna, will send you my eaddy again soon so you can check addy
brucesmom (Dec 20, 2006 8:17:34 PM)
what is your email again anna i will send it again
jd-tractor (Dec 20, 2006 8:17:48 PM)
hey greg how are I dropped in here till someone showed up
brucesmom (Dec 20, 2006 8:17:53 PM)
(This user has left DigiChat)
Raybear (Dec 20, 2006 8:18:38 PM)
jd, what is growing in de garden now?
Raybear (Dec 20, 2006 8:18:55 PM)
hi greg
jd-tractor (Dec 20, 2006 8:19:20 PM)
believe it or not my potatoes are sprouting in the crates already,some mixed up weather ...lol
rayla (Dec 20, 2006 8:19:23 PM)
(This user has left DigiChat)
Raybear (Dec 20, 2006 8:20:05 PM)
did ya tell em it's a bit early to do that? darn government messing with the weather huh? LOL
Raybear (Dec 20, 2006 8:20:07 PM)
rayla?
jd-tractor (Dec 20, 2006 8:20:08 PM)
Hey greg ,do you want to go to our own area or stay here????.....lol
greg (Dec 20, 2006 8:20:12 PM)
(This user has moved to BMD Chat Group)
Raybear (Dec 20, 2006 8:20:23 PM)
guess greg answered that! LOL
jd-tractor (Dec 20, 2006 8:20:33 PM)
guess that's my answer,see ya all later
jd-tractor (Dec 20, 2006 8:20:37 PM)
(This user has moved to BMD Chat Group)
Raybear (Dec 20, 2006 8:20:39 PM)
night jd
brucesmom (Dec 20, 2006 8:20:47 PM)
(This user has entered Parents of Young Adults with DMD)
Raybear (Dec 20, 2006 8:20:53 PM)
wb brucesmom
Raybear (Dec 20, 2006 8:21:02 PM)
rayla left suddenly...wonder if she got the boot?
brucesmom (Dec 20, 2006 8:21:41 PM)
everytime i go to check mail or something i cant get back in unless i log back in
Raybear (Dec 20, 2006 8:21:55 PM)
strange
Raybear (Dec 20, 2006 8:22:04 PM)
do you accidentally close the login window?
brucesmom (Dec 20, 2006 8:22:10 PM)
maybe
Raybear (Dec 20, 2006 8:22:43 PM)
the weather is crazy this year
brucesmom (Dec 20, 2006 8:22:48 PM)
how do you do private chat
Raybear (Dec 20, 2006 8:22:58 PM)
you can't in this chat :(
brucesmom (Dec 20, 2006 8:23:02 PM)
oh
Raybear (Dec 20, 2006 8:23:11 PM)
only the hosts with the "tools" can private message anyone
anna (Dec 20, 2006 8:23:39 PM)
so if you want to PM Raybear or me or Momma you can tell us and we will PM you
brucesmom (Dec 20, 2006 8:23:55 PM)
ok annaou i went to pm y
anna (Dec 20, 2006 8:24:02 PM)
I resent my addy Donna
brucesmom (Dec 20, 2006 8:24:09 PM)
ok
brucesmom (Dec 20, 2006 8:24:26 PM)
(This user has left DigiChat)
Raybear (Dec 20, 2006 8:24:31 PM)
I don't have de tools so I can't answer a PM or do it
anna (Dec 20, 2006 8:25:00 PM)
Raybear, I thought you were a host
Raybear (Dec 20, 2006 8:25:04 PM)
did u end up going home anna? for the week without power?
brucesmom (Dec 20, 2006 8:25:05 PM)
(This user has entered Parents of Young Adults with DMD)
Raybear (Dec 20, 2006 8:25:15 PM)
no, no official hosting since they did the switch
kclayto (Dec 20, 2006 8:25:15 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Dec 20, 2006 8:25:19 PM)
yes, we went home for 5 days
anna (Dec 20, 2006 8:25:24 PM)
Hi Kathy
kclayto (Dec 20, 2006 8:25:35 PM)
Hi Anna and everyone.
Raybear (Dec 20, 2006 8:25:36 PM)
hi kclayto :) long time! how r u?
kclayto (Dec 20, 2006 8:26:01 PM)
Hi raybear, good and it has been a long time. we are good. r u?
Raybear (Dec 20, 2006 8:26:09 PM)
yeah we are ok here ty
momma (Dec 20, 2006 8:26:09 PM)
back
Raybear (Dec 20, 2006 8:26:15 PM)
wb momma
brucesmom (Dec 20, 2006 8:26:38 PM)
ok anna that is the address i sent it too
anna (Dec 20, 2006 8:26:54 PM)
ok, will check now brb
brucesmom (Dec 20, 2006 8:27:21 PM)
wb momma
momma (Dec 20, 2006 8:27:25 PM)
thanks
brucesmom (Dec 20, 2006 8:27:54 PM)
ok anna
anna (Dec 20, 2006 8:28:09 PM)
got it but will have to read later
brucesmom (Dec 20, 2006 8:28:29 PM)
ok
Raybear (Dec 20, 2006 8:28:31 PM)
brb
anna (Dec 20, 2006 8:29:57 PM)
I have to feed R--brb, and sorry, but our schedule is blown today
kclayto (Dec 20, 2006 8:31:08 PM)
I don't know about Anna but it takes me a good half hour to feed Corey.
brucesmom (Dec 20, 2006 8:31:09 PM)
bye for now anna
Raybear (Dec 20, 2006 8:31:32 PM)
i'm grateful ray can still feed self
momma (Dec 20, 2006 8:31:35 PM)
same here kent takes awhile to eat too
anna (Dec 20, 2006 8:31:45 PM)
ok, will give a bite and check here, and so on. it will take R at least 1/2 hour to eat
Raybear (Dec 20, 2006 8:31:45 PM)
guess i need to enjoy that
kclayto (Dec 20, 2006 8:31:56 PM)
Does anyone here have a son who doesn't eat but is on liquid only?
anna (Dec 20, 2006 8:31:58 PM)
yes you do!
anna (Dec 20, 2006 8:32:14 PM)
R drinks Ensure Plus
Raybear (Dec 20, 2006 8:32:25 PM)
eg's son eats very little, had a tube
brucesmom (Dec 20, 2006 8:32:27 PM)
i never had to feed bruce and did well by himself
kclayto (Dec 20, 2006 8:32:30 PM)
Anna as a supplment to his food?
Raybear (Dec 20, 2006 8:32:45 PM)
good to know bruces! i hope raymon will continue for a while
anna (Dec 20, 2006 8:32:49 PM)
yes, supposed to drink 3 cans/day
kclayto (Dec 20, 2006 8:33:04 PM)
Does Roy eat well on regular food?
Raybear (Dec 20, 2006 8:33:04 PM)
eg's son has a feeding tube...not had
momma (Dec 20, 2006 8:33:09 PM)
kent eats a regular diet he usually eats 2 meals and a snack everyday
anna (Dec 20, 2006 8:33:14 PM)
R fed himself until back surgery
kclayto (Dec 20, 2006 8:33:44 PM)
Corey fed himself until he went on vent. Now he can't bring his head down to meet his hand because of tubing and all.
momma (Dec 20, 2006 8:33:45 PM)
kent hasn't fed himself sence probably jr high
anna (Dec 20, 2006 8:33:52 PM)
R has that cross-whatever bite with his teeth that is common with dmd, so hard to chew
kclayto (Dec 20, 2006 8:34:37 PM)
Corey got gtube when he got his trache but he doesn't use it for feeding since he eats all regular food. He gets his meds through tube though.
Raybear (Dec 20, 2006 8:34:38 PM)
can he be off vent long enough to eat if tubes weren't in way?
anna (Dec 20, 2006 8:34:41 PM)
molars do not meet, dispite wearing braces
kclayto (Dec 20, 2006 8:35:13 PM)
Raybear, I doubt it. He can be off the vent for probably 5 to 10 minutes before he needs it back on.
Raybear (Dec 20, 2006 8:35:27 PM)
ahhh ok
anna (Dec 20, 2006 8:35:32 PM)
we raised the dinner table up and R fed himself a few years longer
kclayto (Dec 20, 2006 8:36:08 PM)
I really never tried to have him eat but I don't think he would want to bend his head down with the trache in. I think it would cut his airway.
kclayto (Dec 20, 2006 8:37:16 PM)
Do your boys use the toilet or a commode or other means such as a diaper?
anna (Dec 20, 2006 8:37:23 PM)
R went to DVR counselor today--meeting was 2 hours, but I got a mocha and read a good book
momma (Dec 20, 2006 8:37:54 PM)
kent uses bedside commode and depend and the guards
anna (Dec 20, 2006 8:38:03 PM)
No diapers. uses urinal in wc and sits on commode same time everyday and goes
momma (Dec 20, 2006 8:39:01 PM)
kent takes bladder meds but it so out of control sometimes i wonder if meds are even doing anything
kclayto (Dec 20, 2006 8:39:14 PM)
Corey uses urinal in wheelchair. We pull him forward. For bowels he goes in diaper. At bedtime I put him in the lift and he hangs over the bed and goes within 10 minutes and then I clean him up and he's ready when the night nurse gets here. Sometimes, he goes when I get home from work and then he may or may not go later.
momma (Dec 20, 2006 8:40:32 PM)
kent uses the bedside commode while he hangs in sling same time everday
brucesmom (Dec 20, 2006 8:40:36 PM)
anna does marty come in chat
brucesmom (Dec 20, 2006 8:40:56 PM)
i think i would like to talk to her sometime
kclayto (Dec 20, 2006 8:41:01 PM)
momma, that's good that works for them to go about the same time everyday.
brucesmom (Dec 20, 2006 8:41:14 PM)
since we have more in common right now
Raybear (Dec 20, 2006 8:41:18 PM)
do you have marty's email bruces?
anna (Dec 20, 2006 8:41:23 PM)
sometimes she will. didn't I send you her e-mail addy? I will if I didn't
brucesmom (Dec 20, 2006 8:41:26 PM)
i dont think so
anna (Dec 20, 2006 8:41:42 PM)
I will send it as Marty said I could, Donna
Raybear (Dec 20, 2006 8:41:44 PM)
I think she'd be happy to talk with you
brucesmom (Dec 20, 2006 8:41:46 PM)
can you send it again
brucesmom (Dec 20, 2006 8:42:09 PM)
ok thanks
brucesmom (Dec 20, 2006 8:42:22 PM)
send her my email too
anna (Dec 20, 2006 8:42:33 PM)
I think it would be nice to start a "Good Grief" chat
anna (Dec 20, 2006 8:42:55 PM)
will do
brucesmom (Dec 20, 2006 8:42:58 PM)
ok
kclayto (Dec 20, 2006 8:43:08 PM)
Anna, what was Marty's son's name. Is she one who lost her son a year or two ago?
anna (Dec 20, 2006 8:44:03 PM)
(This user has left DigiChat)
Raybear (Dec 20, 2006 8:44:15 PM)
his name was Tom
brucesmom (Dec 20, 2006 8:44:20 PM)
wow time goes by fast, i remeber when martys son died
kclayto (Dec 20, 2006 8:44:28 PM)
thanks, Raybear, now I remember
brucesmom (Dec 20, 2006 8:44:39 PM)
i just joined the chat right after he died
anna (Dec 20, 2006 8:44:46 PM)
(This user has entered Parents of Young Adults with DMD)
kclayto (Dec 20, 2006 8:44:53 PM)
I am sure he was the same age as my Corey.
momma (Dec 20, 2006 8:44:53 PM)
wb anna
Raybear (Dec 20, 2006 8:44:55 PM)
marty comes every now and then to chat
brucesmom (Dec 20, 2006 8:45:03 PM)
bruces will be 2 months on the 23 of dec
anna (Dec 20, 2006 8:46:14 PM)
Tom was just 21
kclayto (Dec 20, 2006 8:46:18 PM)
sorry brucemom. what do you mean will be 2 months on Dec 23?
brucesmom (Dec 20, 2006 8:46:20 PM)
man i wish i could put my arms around bruce right now
brucesmom (Dec 20, 2006 8:46:47 PM)
bruce passed away 2 months ago on the 23th
kclayto (Dec 20, 2006 8:47:18 PM)
oh, I'm very sorry, I did not remember but I haven't been on this chat enough. I'm trying to stay in touch more often.
brucesmom (Dec 20, 2006 8:47:29 PM)
thats ok
anna (Dec 20, 2006 8:47:31 PM)
we hope you do Kathy
kclayto (Dec 20, 2006 8:47:53 PM)
brb
anna (Dec 20, 2006 8:48:01 PM)
we all need each other I think
momma (Dec 20, 2006 8:48:13 PM)
kent plumn doc called with hopeful news
anna (Dec 20, 2006 8:48:19 PM)
ya??
Raybear (Dec 20, 2006 8:48:30 PM)
a hopeful pulmo with hopeful news???!!! KEWL
brucesmom (Dec 20, 2006 8:48:32 PM)
what is the news momma
momma (Dec 20, 2006 8:49:22 PM)
he was writing a letter to insurance about kents nessatity(SP) for this vent
momma (Dec 20, 2006 8:49:42 PM)
old doc said it was unsafe so they refussed
Raybear (Dec 20, 2006 8:50:00 PM)
urg!
anna (Dec 20, 2006 8:50:02 PM)
old doc proven WRONG
Raybear (Dec 20, 2006 8:50:15 PM)
glad new one is viewing it differently
anna (Dec 20, 2006 8:50:34 PM)
if more of our guys knew about NIV, and were givien a choice they might live longer
Raybear (Dec 20, 2006 8:50:35 PM)
anna, found out the hospitals here have one IPPV machine and it's in a closet gathering dust
momma (Dec 20, 2006 8:50:39 PM)
yes we all feel at ease with new doc
Raybear (Dec 20, 2006 8:51:08 PM)
at least that is what the RT at sleepstudy said
Raybear (Dec 20, 2006 8:51:38 PM)
and none of the hospitals here have a CA so he warned us to haul it with if needed
momma (Dec 20, 2006 8:51:51 PM)
what is ippv machine
Raybear (Dec 20, 2006 8:51:53 PM)
momma, you give me hope
anna (Dec 20, 2006 8:52:02 PM)
I know--we found a Hoyer lift gathering dust in the Children's hospital, but had already brought our own
momma (Dec 20, 2006 8:52:10 PM)
kent use an ippb machine not the same i'm sure
brucesmom (Dec 20, 2006 8:52:22 PM)
cool i just found new pictures by my name i picked a playstation controller
Raybear (Dec 20, 2006 8:52:31 PM)
lol brucesmom
brucesmom (Dec 20, 2006 8:52:40 PM)
because thats what bruce enjoyed doing
momma (Dec 20, 2006 8:52:57 PM)
i hope we can make it easier for someone !
anna (Dec 20, 2006 8:53:08 PM)
paving the way
momma (Dec 20, 2006 8:53:30 PM)
but anna was my and kent lfe saver!!!
Raybear (Dec 20, 2006 8:53:31 PM)
yeah. i'm hoping the unexpected cardio the pulmo is worried about makes him see that I'm not all that stupid
Raybear (Dec 20, 2006 8:54:06 PM)
maybe our pulmo will wake up and look at treating dmd differently
anna (Dec 20, 2006 8:54:37 PM)
Many who choose not to trach will have years added to their lives if they choose to use the LTV's and v-pap
momma (Dec 20, 2006 8:54:42 PM)
good luck i think some plumonary doc have huge egos nothing will change them
Raybear (Dec 20, 2006 8:54:45 PM)
or at least call someone with more experience then he has!
kclayto (Dec 20, 2006 8:54:55 PM)
I'm back!
Raybear (Dec 20, 2006 8:55:02 PM)
wb kclayto
Raybear (Dec 20, 2006 8:55:05 PM)
true momma
momma (Dec 20, 2006 8:55:10 PM)
wb kc
Raybear (Dec 20, 2006 8:55:24 PM)
pulmo's seem to suffer from O2 deprivation...brain shuts down
momma (Dec 20, 2006 8:55:35 PM)
mabey ya can keep looking for another doc raybear?
anna (Dec 20, 2006 8:55:55 PM)
duct tape the doc to a chair and force him to watch the NIV film and read Doctorbach.com
Raybear (Dec 20, 2006 8:55:59 PM)
closest would be 3 hrs away but we are definitely considering that
Raybear (Dec 20, 2006 8:56:14 PM)
i wish anna LOL
anna (Dec 20, 2006 8:56:46 PM)
I would definately consider it. if emergency here that doc can give instructions until Raymon could be transported to good hospital/doc
Raybear (Dec 20, 2006 8:56:52 PM)
thanks to chat and groups online I can fight now and hopefully before we are in crisis
Raybear (Dec 20, 2006 8:57:27 PM)
can get something rolling
Raybear (Dec 20, 2006 8:57:37 PM)
mda sent me a survery about the local support group.
Raybear (Dec 20, 2006 8:57:54 PM)
not smart on their part LOL I gave it to them about how substandard care is at the clinic here
anna (Dec 20, 2006 8:57:58 PM)
how local is it?
brucesmom (Dec 20, 2006 8:58:05 PM)
does anyone here go to their local support groups
momma (Dec 20, 2006 8:58:11 PM)
anna what kind of plan do you have if R has problems?
momma (Dec 20, 2006 8:58:16 PM)
i use too donna
brucesmom (Dec 20, 2006 8:58:39 PM)
we went to a few, but really didnt help us much
Raybear (Dec 20, 2006 8:58:42 PM)
mda clinic is local and lousy
anna (Dec 20, 2006 8:58:47 PM)
used to drive 50 miles to go, now just hang with other dmd family for support. and these chats are my lifeline too
kclayto (Dec 20, 2006 8:58:48 PM)
Finding a good pulmo doc who believes in choices is the best thing. Corey and I found a pediatric pulmo here that knew about all of the options and COrey tried NIV first but didn't like the masks and the way the breathing worked so when he got pneumonia he told the doc he wanted a trache. He has never regretted it. His first pulmo doc was Adult and he only offered NIV. Told him traches were uncomfortable and he wouldn't want one.
Raybear (Dec 20, 2006 8:59:15 PM)
choice is what counts
brucesmom (Dec 20, 2006 8:59:28 PM)
being in this chat was more helpful to us
Raybear (Dec 20, 2006 8:59:35 PM)
eg's nephew tried NIV and didn't like it or do well. he doesn't mind trach
anna (Dec 20, 2006 8:59:37 PM)
did Corey try the mouthpice interface at all?
kclayto (Dec 20, 2006 8:59:54 PM)
No he only tried the mask
anna (Dec 20, 2006 9:00:06 PM)
Momma--my plan is to get to his doc who is only about 12 miles away now
kclayto (Dec 20, 2006 9:00:10 PM)
he actually tried several masks but just felt that none were suitable.
Raybear (Dec 20, 2006 9:00:14 PM)
i could see where a mask wouldn't be a great option
anna (Dec 20, 2006 9:00:27 PM)
no, a mask is not comfortable for all day
brucesmom (Dec 20, 2006 9:00:28 PM)
well i have to go now and get things ready for work
kclayto (Dec 20, 2006 9:00:43 PM)
nice to chat with you brucesmom
anna (Dec 20, 2006 9:00:46 PM)
Bless you Donna
Raybear (Dec 20, 2006 9:00:48 PM)
take care brucesmom. have a good holiday
momma (Dec 20, 2006 9:01:16 PM)
rt want kent to use full mask with bipap at night but he wont he phobic
brucesmom (Dec 20, 2006 9:01:18 PM)
thanks and god bless you all
momma (Dec 20, 2006 9:01:23 PM)
night donna
brucesmom (Dec 20, 2006 9:01:26 PM)
night
anna (Dec 20, 2006 9:01:26 PM)
Kathy, did you see the film on NIV I had link to in past chats?
kclayto (Dec 20, 2006 9:01:39 PM)
No, I missed that.
anna (Dec 20, 2006 9:01:57 PM)
ok, will try to get link on here brb, may boot myself
brucesmom (Dec 20, 2006 9:01:58 PM)
hope santa brings everyone what they want
kclayto (Dec 20, 2006 9:01:59 PM)
do you still have it? you could maybe email it to me?
Raybear (Dec 20, 2006 9:02:36 PM)
i don't know how my son will do. he hates the cough assist and mask, can't imagine if he had to wear it long
Raybear (Dec 20, 2006 9:02:43 PM)
but i do want the option to try
anna (Dec 20, 2006 9:02:59 PM)
http://www.researchchannel.org/prog/displayevent.aspx?rID=4123&fID=853
momma (Dec 20, 2006 9:03:00 PM)
you too donna
Raybear (Dec 20, 2006 9:03:06 PM)
you too brucesmom. i got my gift early :) a new pc monitor
kclayto (Dec 20, 2006 9:03:09 PM)
raybear, I would definitely try. At least Corey got to try and he also did in the hospital and that is where he decided.
momma (Dec 20, 2006 9:03:42 PM)
glad it owrk out well fro him kclayto
Raybear (Dec 20, 2006 9:04:26 PM)
sad that the MDA can't seem to fund training for clinic doctors
Raybear (Dec 20, 2006 9:04:35 PM)
and standardize their clinics
anna (Dec 20, 2006 9:04:39 PM)
Kathy, the doc in the film is my son's doc. and the young man in the film is 31 with dmd and has used it ten years
Raybear (Dec 20, 2006 9:04:40 PM)
it might help
momma (Dec 20, 2006 9:04:56 PM)
that will probaby never happened raybear
kclayto (Dec 20, 2006 9:05:14 PM)
Thanks, Anna. I saved it to my favorites.
Raybear (Dec 20, 2006 9:05:34 PM)
i've written a few times to them suggesting they standardize clinics and do some type of updating on a reg basis to their clinic drs.
Raybear (Dec 20, 2006 9:05:42 PM)
your probably right though momma
momma (Dec 20, 2006 9:06:14 PM)
sorry to pesimistic raybear
Raybear (Dec 20, 2006 9:06:18 PM)
if Jerry Lewis had to be treated at our clinic he'd fix it quick!
Raybear (Dec 20, 2006 9:06:30 PM)
oh I understand momma
momma (Dec 20, 2006 9:06:35 PM)
yea maybey
kclayto (Dec 20, 2006 9:06:44 PM)
Lives could be saved if all of the doctors could be in one clinic so the young get the checkups they need early on. You are on the right track. The pulmo, cardiologist, neurologist, PT, OT, etc should all be there.
brucesmom (Dec 20, 2006 9:06:50 PM)
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anna (Dec 20, 2006 9:06:50 PM)
unfortunately, we need some big shot's son to get dmd--then the money might fly
momma (Dec 20, 2006 9:07:07 PM)
true anna
Raybear (Dec 20, 2006 9:07:28 PM)
big shots get genetic testing and abort most likely so that isn't going to happen
Raybear (Dec 20, 2006 9:08:04 PM)
besides, big shots can afford care and don't go to MDA clinics
kclayto (Dec 20, 2006 9:08:11 PM)
well if they are born because it wasn't genetic but showed up anyhow, then they would have to deal with i t.
anna (Dec 20, 2006 9:08:40 PM)
parents need to have a way to find out about the dr's expertise and even bed-side manner, although I will go with a grouch if he is a good dr for dmd
Raybear (Dec 20, 2006 9:08:57 PM)
grouch is ok if he's good.
Raybear (Dec 20, 2006 9:09:24 PM)
parent's assume (and the public assumes) that all the MDA clinic drs are "good ones"
Raybear (Dec 20, 2006 9:09:28 PM)
which simply isn't so.
anna (Dec 20, 2006 9:09:57 PM)
parents need to educate themselves and talk to other dmd parents
Raybear (Dec 20, 2006 9:10:07 PM)
the telethon makes it seem that we all have access to those drs who speak on the telethon
kclayto (Dec 20, 2006 9:10:36 PM)
most of our clinics docs were rehab and then they got a neurologist. He seems to be better than the others were. Corey hasn't gone back since they weighed him in the laundry room at the hospital.
Raybear (Dec 20, 2006 9:10:54 PM)
in the laundry room?!
anna (Dec 20, 2006 9:11:00 PM)
at least they did weigh him!
Raybear (Dec 20, 2006 9:11:13 PM)
now that had not crossed our minds when we were trying to figure out how to weigh raymon LOL
anna (Dec 20, 2006 9:11:16 PM)
well, R had his braces in a basement laundry room
kclayto (Dec 20, 2006 9:11:18 PM)
yes, his wheelchair didn't fit on their regular wheelchair scale so they took him there and he didn't like that.
Raybear (Dec 20, 2006 9:11:29 PM)
ohhhh
Raybear (Dec 20, 2006 9:11:36 PM)
we don't have a wc scale here LOL
Raybear (Dec 20, 2006 9:11:52 PM)
but if we bring our hoyer we can put him in a bed to weigh him
kclayto (Dec 20, 2006 9:12:15 PM)
we wanted to get our own scale but it costs about $600.00
Raybear (Dec 20, 2006 9:12:30 PM)
we ordered a new hoyer and hopefully will get scale
anna (Dec 20, 2006 9:13:24 PM)
i can weigh R in the freight room of the Old hospital, but now he is so light my hubby can pick him up and step on scale
kclayto (Dec 20, 2006 9:13:37 PM)
Is there a secret to get a scale covered by insurance? I know it has to be deemed medically necessary and we can't think of a good excuse except that there is no easy way to get him weighed. I have been told by medical suppliers that insurance won't cover.
Raybear (Dec 20, 2006 9:13:38 PM)
not good anna. hope you can fatten up that boy!
anna (Dec 20, 2006 9:13:43 PM)
Out Hoyer is 13 years old and still going strong
Raybear (Dec 20, 2006 9:14:00 PM)
I hear that too kathy so I'm not holding my breathe we'll get one
Raybear (Dec 20, 2006 9:14:17 PM)
we said he was on a nutritional program
kclayto (Dec 20, 2006 9:14:22 PM)
If you do get one, Raybear, let me know and I'll make an attempt to get one covered.
Raybear (Dec 20, 2006 9:14:30 PM)
i will !
anna (Dec 20, 2006 9:14:56 PM)
chat is almost over, so going to go and let R go to "WC Gang" now. A blessed Christmas to all if I can't chat tomorrow.
Raybear (Dec 20, 2006 9:15:02 PM)
I wrote the letter of need and the dr signed it and the provider said he sent it, that he couldn't write one better. soooooo we'll see LOL
momma (Dec 20, 2006 9:15:20 PM)
ok anna have a great holiday
Raybear (Dec 20, 2006 9:15:21 PM)
you too anna! Be blessed, don't blow away and hope it all goes well.
anna (Dec 20, 2006 9:15:54 PM)
thanks, big wind blows tonight they say. so many trees are loosened from last storm and may fall.
anna (Dec 20, 2006 9:16:06 PM)
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momma (Dec 20, 2006 9:17:14 PM)
are you two still here ?
kclayto (Dec 20, 2006 9:17:25 PM)
I am
momma (Dec 20, 2006 9:17:33 PM)
ok
Raybear (Dec 20, 2006 9:17:52 PM)
i am sorry
momma (Dec 20, 2006 9:18:03 PM)
np just checking
Raybear (Dec 20, 2006 9:18:05 PM)
had to scratch an itch and FAST lol
momma (Dec 20, 2006 9:18:12 PM)
lol
kclayto (Dec 20, 2006 9:18:16 PM)
Merry Christmas to you all and your families. Gotta run!
momma (Dec 20, 2006 9:18:31 PM)
ok night kclayto
momma (Dec 20, 2006 9:18:39 PM)
happy holidays
kclayto (Dec 20, 2006 9:18:47 PM)
good night everyone!