DMD Parent Chat

deebug90 (Sep 18, 2008 7:54:36 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 7:54:49 PM)
welcme deebug

deebug90 (Sep 18, 2008 7:54:50 PM)
(This user has moved to Positive Thinking)

bayper (Sep 18, 2008 8:00:42 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 8:00:50 PM)
hi bayper

bayper (Sep 18, 2008 8:01:06 PM)
hey

twinglema (Sep 18, 2008 8:01:12 PM)
how are u tonite?

bayper (Sep 18, 2008 8:01:31 PM)
little tired.. you?

twinglema (Sep 18, 2008 8:01:36 PM)
k

twinglema (Sep 18, 2008 8:01:51 PM)
i habe a 11 yr old dmder

twinglema (Sep 18, 2008 8:01:55 PM)
have

bayper (Sep 18, 2008 8:02:13 PM)
me too

twinglema (Sep 18, 2008 8:02:21 PM)
in case ur memory is as bad as mine lol

twinglema (Sep 18, 2008 8:02:34 PM)
is he your only child

bayper (Sep 18, 2008 8:03:00 PM)
no I also have a 19 year old DMD and a 17 year old

twinglema (Sep 18, 2008 8:03:24 PM)
how does your 17 yr old deal with having 2 bros w/ dmd

bayper (Sep 18, 2008 8:04:35 PM)
he has his moments. but is a great brother and his brothers know he needs his own life

jen-c (Sep 18, 2008 8:04:57 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 8:05:01 PM)
sounds like you have done a good job w/them

twinglema (Sep 18, 2008 8:05:04 PM)
hi jen

jen-c (Sep 18, 2008 8:05:18 PM)
hi twingle

twinglema (Sep 18, 2008 8:05:26 PM)
hows ur 19 yr old doing bayper

bayper (Sep 18, 2008 8:05:31 PM)
hi jen

twinglema (Sep 18, 2008 8:05:33 PM)
how are you jen

bayper (Sep 18, 2008 8:05:46 PM)
he is on a vent and is doing better

twinglema (Sep 18, 2008 8:05:56 PM)
glad to hear he is better

jen-c (Sep 18, 2008 8:05:58 PM)
doing well. Haven't been on in a while

twinglema (Sep 18, 2008 8:06:01 PM)
how long on vent?

bayper (Sep 18, 2008 8:06:10 PM)
march

jen-c (Sep 18, 2008 8:06:27 PM)
hi bayper

twinglema (Sep 18, 2008 8:06:37 PM)
remind me how old your son is jen

jen-c (Sep 18, 2008 8:07:00 PM)
just turned 3 on august 30

twinglema (Sep 18, 2008 8:07:13 PM)
how is he

twinglema (Sep 18, 2008 8:07:29 PM)
had he done niv prior to vent?

twinglema (Sep 18, 2008 8:07:38 PM)
tell me to myob any time lol

jen-c (Sep 18, 2008 8:08:16 PM)
(This user has left DigiChat)

bayper (Sep 18, 2008 8:08:20 PM)
no niv but had been on a bi-pap for about 2 years

momma (Sep 18, 2008 8:08:52 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 8:09:03 PM)
hey momma

momma (Sep 18, 2008 8:09:17 PM)
hi twingle

twinglema (Sep 18, 2008 8:09:19 PM)
sorry bayper i thought niv and bi-pap were same thing

momma (Sep 18, 2008 8:09:27 PM)
oh

momma (Sep 18, 2008 8:09:41 PM)
well bipap is a from of niv

momma (Sep 18, 2008 8:09:47 PM)
form

twinglema (Sep 18, 2008 8:10:13 PM)
i have learned to read your meaning, not your spelling momma :)

momma (Sep 18, 2008 8:10:14 PM)
its assited breathing thats non invasive

momma (Sep 18, 2008 8:10:27 PM)
thats good:)

bayper (Sep 18, 2008 8:10:30 PM)
I guess you are right about that... but he never was able to try anything else. in the end he likes the vent

momma (Sep 18, 2008 8:10:50 PM)
that what it all about bayper

momma (Sep 18, 2008 8:11:08 PM)
but our boys and men need the right to choose

dunut1967 (Sep 18, 2008 8:11:38 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 8:11:45 PM)
welcome dunut

momma (Sep 18, 2008 8:11:48 PM)
some dr think that trach is the answer to all

jen-c (Sep 18, 2008 8:12:06 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 8:12:11 PM)
wb jen

momma (Sep 18, 2008 8:12:14 PM)
but im glad your son is ok with his chose:)

momma (Sep 18, 2008 8:12:19 PM)
hi jen

dunut1967 (Sep 18, 2008 8:12:36 PM)
(This user has moved to qatest)

twinglema (Sep 18, 2008 8:12:50 PM)
that is 2nd time that happened tonite

jen-c (Sep 18, 2008 8:12:56 PM)
thanks twingle - hi momma

twinglema (Sep 18, 2008 8:13:15 PM)
usu i am one gertting boot

momma (Sep 18, 2008 8:13:28 PM)
yea

twinglema (Sep 18, 2008 8:13:56 PM)
i'll try to hold on tonite

jen-c (Sep 18, 2008 8:14:24 PM)
(This user has left DigiChat)

twinglema (Sep 18, 2008 8:14:45 PM)
she needs java

twinglema (Sep 18, 2008 8:14:57 PM)
i could use some now but would be up all nite ;)

momma (Sep 18, 2008 8:15:11 PM)
wonder why digi chat for mda is like this i go to dwlz it a weight loss site and it much faster to get on and i never get the boot?

momma (Sep 18, 2008 8:15:20 PM)
lol

twinglema (Sep 18, 2008 8:15:45 PM)
so. luke decided that if you flip someone off w/ a diff finger it doesn't count

momma (Sep 18, 2008 8:15:59 PM)
oh really

twinglema (Sep 18, 2008 8:16:17 PM)
dont know why this chat is weird it is only one i use other that face book which really isnt chat

twinglema (Sep 18, 2008 8:16:28 PM)
he got in same amt of trouble!

momma (Sep 18, 2008 8:16:50 PM)
your son is very creative :)

twinglema (Sep 18, 2008 8:17:01 PM)
well that is one word for it lol

twinglema (Sep 18, 2008 8:17:16 PM)
wish he would think of creative ways to not get in trouble

twinglema (Sep 18, 2008 8:17:34 PM)
and, i found perfect way to tic off preteen daughter

momma (Sep 18, 2008 8:17:37 PM)
yea boys will be boys

momma (Sep 18, 2008 8:17:51 PM)
how so twingle

twinglema (Sep 18, 2008 8:18:14 PM)
volunteer to help with her youth group

momma (Sep 18, 2008 8:18:30 PM)
oh mother how could you ! lol

twinglema (Sep 18, 2008 8:18:43 PM)
i am going for worse mom of the yr award

momma (Sep 18, 2008 8:18:49 PM)
lol

momma (Sep 18, 2008 8:19:05 PM)
i told kent about your sons finger he laughed

twinglema (Sep 18, 2008 8:19:08 PM)
once she realized i was not going to follow her around she settled down

momma (Sep 18, 2008 8:19:19 PM)
she is what 13

twinglema (Sep 18, 2008 8:19:26 PM)
tell kent to knoc it off or i will come over and slap him lol

twinglema (Sep 18, 2008 8:19:34 PM)
in a month she will be

momma (Sep 18, 2008 8:20:08 PM)
yea thats a tuff age

momma (Sep 18, 2008 8:20:34 PM)
kent just smiled back at you twingle:)

twinglema (Sep 18, 2008 8:20:35 PM)
u r telling me

twinglema (Sep 18, 2008 8:20:46 PM)
hi kent

twinglema (Sep 18, 2008 8:21:14 PM)
heard form ann?

momma (Sep 18, 2008 8:21:21 PM)
yesterday

momma (Sep 18, 2008 8:21:33 PM)
R back to work

twinglema (Sep 18, 2008 8:21:40 PM)
awesome

twinglema (Sep 18, 2008 8:21:47 PM)
how are feedings going

momma (Sep 18, 2008 8:21:54 PM)
yea thats what i thought

momma (Sep 18, 2008 8:22:07 PM)
i think he at 40 ml an hr

twinglema (Sep 18, 2008 8:22:13 PM)
luke also decided he wanted to quit mirilax

momma (Sep 18, 2008 8:22:24 PM)
oh really

twinglema (Sep 18, 2008 8:22:43 PM)
when the plunger became my best friend he started it again

momma (Sep 18, 2008 8:23:22 PM)
kent had his sp changed today they had trouble again so instead of nurse the dr finnally got it in

momma (Sep 18, 2008 8:23:45 PM)
miralax is kent best friend

twinglema (Sep 18, 2008 8:24:09 PM)
danf i do not understand why it isnt easier to change

twinglema (Sep 18, 2008 8:24:14 PM)
mine too lol

twinglema (Sep 18, 2008 8:24:20 PM)
*dang

momma (Sep 18, 2008 8:24:22 PM)
bayper are ya still here?

twinglema (Sep 18, 2008 8:24:37 PM)
sorry bayper, some host i am

bayper (Sep 18, 2008 8:25:08 PM)
yes I am here I am also trying to talk to my 17 year old who just got home from work

momma (Sep 18, 2008 8:25:23 PM)
well the get it through the skin but once they get to the bladder i wonder if his bladder spasium and it tighten s up

twinglema (Sep 18, 2008 8:25:50 PM)
can he take anti spamotic before changing it?

twinglema (Sep 18, 2008 8:25:57 PM)
hubby takes ditropan

momma (Sep 18, 2008 8:26:01 PM)
i forgott to ask

momma (Sep 18, 2008 8:26:49 PM)
kent use to take that but it makes his stomach motility nonexsisting he can't go to the bathroom

twinglema (Sep 18, 2008 8:27:20 PM)
i asked huby

twinglema (Sep 18, 2008 8:28:02 PM)
he said you could try taking ditropan a day or 2 before changing because bladder will spasm without some kind of med

anna (Sep 18, 2008 8:28:15 PM)
(This user has entered DMD Parent Chat)

momma (Sep 18, 2008 8:28:21 PM)
ok ty

momma (Sep 18, 2008 8:28:25 PM)
hi anna

twinglema (Sep 18, 2008 8:28:33 PM)
he asked how often you change it and he takes on 5mg ditropan xl today

twinglema (Sep 18, 2008 8:28:36 PM)
a day

twinglema (Sep 18, 2008 8:28:40 PM)
hi anna

momma (Sep 18, 2008 8:28:51 PM)
once a month

anna (Sep 18, 2008 8:29:00 PM)
hello

twinglema (Sep 18, 2008 8:29:16 PM)
he cannot take too much ditropan for same reason

momma (Sep 18, 2008 8:29:18 PM)
kent use to take to bladder meds now none

twinglema (Sep 18, 2008 8:29:29 PM)
do you rem how much he tokk?

momma (Sep 18, 2008 8:30:00 PM)
he took like 5mg each 2 -3 times a day

twinglema (Sep 18, 2008 8:30:05 PM)
hubby also has motility probs and 5mg/day seems to be enough for bladder but not too much for bowels

momma (Sep 18, 2008 8:30:17 PM)
his was propanthlene and oxebutinin

twinglema (Sep 18, 2008 8:30:21 PM)
hubby only takes 5 mg a day

momma (Sep 18, 2008 8:30:25 PM)
oh

momma (Sep 18, 2008 8:30:39 PM)
so how was your day anna

twinglema (Sep 18, 2008 8:30:48 PM)
he said his bladder will really spasm if he does not take it and then i could not change it

twinglema (Sep 18, 2008 8:31:02 PM)
maybe try a small dose to see if it helps?

momma (Sep 18, 2008 8:31:05 PM)
oh ok

anna (Sep 18, 2008 8:31:10 PM)
ok, but just got home. R's boss always comes up with some task at 4:30

twinglema (Sep 18, 2008 8:31:24 PM)
R is doing good i hear

momma (Sep 18, 2008 8:31:36 PM)
slave driver ?

anna (Sep 18, 2008 8:31:48 PM)
yes, but woke up last night moaning in pain around tube site

anna (Sep 18, 2008 8:32:17 PM)
if you work for this company you may as well chain yourself to the desk

twinglema (Sep 18, 2008 8:32:19 PM)
oh no he ok

twinglema (Sep 18, 2008 8:32:53 PM)
dr hubby says 5mg 2-3 times a day is too much

momma (Sep 18, 2008 8:32:58 PM)
is it red ?

anna (Sep 18, 2008 8:33:02 PM)
ues, shot in tylenol and gave 3 Ibuprofen, changed dressing, stopped feed, vented tube, then sat with him until he went back to sleep

twinglema (Sep 18, 2008 8:33:11 PM)
he says take 5mg dtropan XL once a day

anna (Sep 18, 2008 8:33:18 PM)
one small area is reddish

twinglema (Sep 18, 2008 8:33:22 PM)
very lite green

anna (Sep 18, 2008 8:33:26 PM)
but going to dr tomorrow

momma (Sep 18, 2008 8:33:33 PM)
oh thats good

eg (Sep 18, 2008 8:33:36 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 8:33:37 PM)
sorry you were not asking about pill cxolor

momma (Sep 18, 2008 8:33:41 PM)
hi eg

twinglema (Sep 18, 2008 8:33:41 PM)
hey eg

eg (Sep 18, 2008 8:33:42 PM)
Hello

anna (Sep 18, 2008 8:33:53 PM)
hi eg

twinglema (Sep 18, 2008 8:34:00 PM)
ann is it infected?

anna (Sep 18, 2008 8:34:07 PM)
I don't think so

momma (Sep 18, 2008 8:34:10 PM)
how he feeling other wise anna

anna (Sep 18, 2008 8:34:15 PM)
but, maybe

eg (Sep 18, 2008 8:34:17 PM)
what u all chatting about

anna (Sep 18, 2008 8:34:24 PM)
he went to work as usual

twinglema (Sep 18, 2008 8:34:26 PM)
tube troubles

twinglema (Sep 18, 2008 8:34:32 PM)
feeding and bladder

eg (Sep 18, 2008 8:34:35 PM)
oh

eg (Sep 18, 2008 8:34:40 PM)
what kind?

anna (Sep 18, 2008 8:34:45 PM)
just the caregiver cannot give him pills so had to have office mate give him his pain pills

twinglema (Sep 18, 2008 8:34:46 PM)
try to contain your excitement

eg (Sep 18, 2008 8:34:59 PM)
LOL

twinglema (Sep 18, 2008 8:34:59 PM)
why cant caregiver dso it anna?

eg (Sep 18, 2008 8:35:07 PM)
me excited LOL

twinglema (Sep 18, 2008 8:35:25 PM)
what new eg have not talked to you in ages

anna (Sep 18, 2008 8:35:26 PM)
not allowed to legally if not a nurse and not in the careplan specificaaly

twinglema (Sep 18, 2008 8:35:37 PM)
but coworker can?

twinglema (Sep 18, 2008 8:35:42 PM)
goofy rules

eg (Sep 18, 2008 8:35:51 PM)
yeah only certain people can give meds

anna (Sep 18, 2008 8:35:53 PM)
yes, anyone can who will

momma (Sep 18, 2008 8:36:05 PM)
can they put it in his hand then help put it in his mouth?

twinglema (Sep 18, 2008 8:36:06 PM)
except caregiver

eg (Sep 18, 2008 8:36:11 PM)
not too much new here

twinglema (Sep 18, 2008 8:36:21 PM)
are you all in same house with ac?

twinglema (Sep 18, 2008 8:36:32 PM)
how is michael?

eg (Sep 18, 2008 8:36:33 PM)
my attendant workers can not give meds

anna (Sep 18, 2008 8:36:37 PM)
that would be really hard for R to do

eg (Sep 18, 2008 8:36:46 PM)
he is pretty good having a few tummy aches

twinglema (Sep 18, 2008 8:36:56 PM)
hows school going?

eg (Sep 18, 2008 8:37:01 PM)
he wanted to wean off prevacid so we have been doing that for a few weeks now

eg (Sep 18, 2008 8:37:14 PM)
we just got our work so need to put on computer

momma (Sep 18, 2008 8:37:17 PM)
kent too anna just wondered

eg (Sep 18, 2008 8:37:18 PM)
it is a cd

twinglema (Sep 18, 2008 8:37:19 PM)
luke convinced me to do that with miralx

twinglema (Sep 18, 2008 8:37:35 PM)
it was not good idea

anna (Sep 18, 2008 8:37:39 PM)
R finally got them to turn off air conditioning in the office--it blew right on him and he wears 3 layers to work. found out the building has no heat--but it was warm enough last winter.

twinglema (Sep 18, 2008 8:37:42 PM)
you home school right/

twinglema (Sep 18, 2008 8:37:55 PM)
poor R

eg (Sep 18, 2008 8:38:09 PM)
yeah

anna (Sep 18, 2008 8:38:19 PM)
at least I can put the Miralax into tube now

twinglema (Sep 18, 2008 8:38:26 PM)
good for you, i do not have enough patience

eg (Sep 18, 2008 8:38:29 PM)
I read transcripts last night that r is doing well with tube

eg (Sep 18, 2008 8:38:39 PM)
we do everything through the tube

eg (Sep 18, 2008 8:38:52 PM)
meds etc

anna (Sep 18, 2008 8:38:56 PM)
but he is supposed to be up to 80 mls per hour and we are only up to 45

momma (Sep 18, 2008 8:38:57 PM)
wonder if the feed is causing pain mabey change? but tommrow dr will help im sure

twinglema (Sep 18, 2008 8:39:01 PM)
i spend too much time playing on my facebook

eg (Sep 18, 2008 8:39:17 PM)
he having pain?

anna (Sep 18, 2008 8:39:29 PM)
it comes and goes

momma (Sep 18, 2008 8:39:42 PM)
like cramps?

eg (Sep 18, 2008 8:39:42 PM)
is R''s upper body elevated at night during the feeds?

anna (Sep 18, 2008 8:39:43 PM)
hasn't kept him from work

bayper (Sep 18, 2008 8:39:45 PM)
did he have the pain before

anna (Sep 18, 2008 8:40:02 PM)
no, this pain is associated with new feeding tube

twinglema (Sep 18, 2008 8:40:15 PM)
is that normal initially

eg (Sep 18, 2008 8:40:31 PM)
it can be until they get use to it

bayper (Sep 18, 2008 8:40:39 PM)
what does he have right now?

anna (Sep 18, 2008 8:40:56 PM)
he will be ok. have?

bayper (Sep 18, 2008 8:41:00 PM)
is it the tube before the mickey

eg (Sep 18, 2008 8:41:07 PM)
anna did u see my ?

anna (Sep 18, 2008 8:41:08 PM)
yes, new tube

eg (Sep 18, 2008 8:41:14 PM)
about elevating upper body

eg (Sep 18, 2008 8:41:34 PM)
they have a long tube for few weeks then can get a mic key

anna (Sep 18, 2008 8:41:56 PM)
oh, sorry. he usually goes up and down in sleep all night, but tube is where he help remote so is fairly upright all night

anna (Sep 18, 2008 8:42:12 PM)
held remote on tummy

eg (Sep 18, 2008 8:42:17 PM)
yeah just make sure he is upright as flat can cause problems

bayper (Sep 18, 2008 8:42:24 PM)
I doubt the pain has anything to do with the feeds per say but that first tube caused my Matt some weird pains and they went away with the mickey was placed... when feeding his head needs to be elevated

anna (Sep 18, 2008 8:42:37 PM)
I hope they cut off the "tabs" tomorrow at dr

eg (Sep 18, 2008 8:43:16 PM)
maybe they will go away when mic key is placed

momma (Sep 18, 2008 8:43:19 PM)
see kent is way differant than most his is a pain ot has a long tube we deal with every day

eg (Sep 18, 2008 8:43:48 PM)
we hated that long tube

eg (Sep 18, 2008 8:43:54 PM)
but at least it was a temp

anna (Sep 18, 2008 8:43:55 PM)
momma--do you use that little tube belt with the velcro?

momma (Sep 18, 2008 8:44:09 PM)
but it better than any other option for him

momma (Sep 18, 2008 8:44:12 PM)
no

momma (Sep 18, 2008 8:44:19 PM)
we just tape it

eg (Sep 18, 2008 8:44:36 PM)
is it like a pouch anna?

anna (Sep 18, 2008 8:44:53 PM)
haven't seen it yet

eg (Sep 18, 2008 8:44:56 PM)
oh

eg (Sep 18, 2008 8:45:13 PM)
M was given a pouch we could use to roll up the tube a bit to conceal

anna (Sep 18, 2008 8:45:18 PM)
we made a "washer" to go next to skin to hold tube up a tiny bit

eg (Sep 18, 2008 8:45:33 PM)
think we used it during the day when he was not having feeds

anna (Sep 18, 2008 8:45:48 PM)
I think that is it--might ask for one tomorrow. I am the queen of tape...

eg (Sep 18, 2008 8:45:53 PM)
so twingle anything new

twinglema (Sep 18, 2008 8:46:03 PM)
not really

eg (Sep 18, 2008 8:46:08 PM)
kids in school

twinglema (Sep 18, 2008 8:46:21 PM)
luke had some issues at beginning of school yr but they are resolving

eg (Sep 18, 2008 8:46:32 PM)
oh good they are getting resolved

twinglema (Sep 18, 2008 8:46:33 PM)
well, except for creative finger use right momma?

eg (Sep 18, 2008 8:46:39 PM)
oh

momma (Sep 18, 2008 8:46:40 PM)
lol

eg (Sep 18, 2008 8:46:45 PM)
whats that

eg (Sep 18, 2008 8:46:58 PM)
or should I not ask LOL

momma (Sep 18, 2008 8:47:01 PM)
sorry kent and are are bad oops!

twinglema (Sep 18, 2008 8:47:06 PM)
he used "wrong" finger to flip somone off thnking it was ok then

eg (Sep 18, 2008 8:47:11 PM)
oh oh

anna (Sep 18, 2008 8:47:19 PM)
yes, the principal had to call me once about what R said--but I blame his father.

twinglema (Sep 18, 2008 8:47:33 PM)
his teacher must think strange things go on in our house

twinglema (Sep 18, 2008 8:47:40 PM)
lol at anna

anna (Sep 18, 2008 8:47:47 PM)
lol at twingle

twinglema (Sep 18, 2008 8:48:07 PM)
and my daughter is tryiong to flunk 7th grade

eg (Sep 18, 2008 8:48:20 PM)
hmm

eg (Sep 18, 2008 8:48:28 PM)
trying huh

twinglema (Sep 18, 2008 8:48:33 PM)
i told her go ahead as then they would all grad in same yr and i would only have to throw one party!

eg (Sep 18, 2008 8:48:40 PM)
LOL

twinglema (Sep 18, 2008 8:48:57 PM)
it is her attitude that causes prob, not her ability

eg (Sep 18, 2008 8:49:02 PM)
yeah

momma (Sep 18, 2008 8:49:12 PM)
tell her if she doesnt do better your gonna go to class with her twingle

twinglema (Sep 18, 2008 8:49:12 PM)
dad thinks wqe can control it but i know we cant

eg (Sep 18, 2008 8:49:17 PM)
I been volunteering at a christian school

anna (Sep 18, 2008 8:49:22 PM)
my daughter didn't try much in school but ended up with a BA and BS, so don't give up on her

twinglema (Sep 18, 2008 8:49:27 PM)
i do at theirs

eg (Sep 18, 2008 8:49:30 PM)
and the kids in 7th and 8th are tough

twinglema (Sep 18, 2008 8:49:34 PM)
i wont anna

twinglema (Sep 18, 2008 8:50:02 PM)
i threaten her with being in same calss as her brothers

anna (Sep 18, 2008 8:50:17 PM)
that might scare her!

eg (Sep 18, 2008 8:50:22 PM)
I use to tell the kids I would go to school with them if they ever got into trouble

anna (Sep 18, 2008 8:50:31 PM)
me too eg

eg (Sep 18, 2008 8:50:40 PM)
and they did not want that

twinglema (Sep 18, 2008 8:50:45 PM)
she told me her teacher doesn't write assignmnets on board but miraculously teach had just started to do it the day i went in and checked

eg (Sep 18, 2008 8:50:51 PM)
I said I would even hang out with them and their friends during lunch

anna (Sep 18, 2008 8:51:10 PM)
haha

anna (Sep 18, 2008 8:51:25 PM)
the things a mom has to do.

twinglema (Sep 18, 2008 8:51:25 PM)
lol i told my boys i would do that when they fought at lunch

eg (Sep 18, 2008 8:51:37 PM)
yep

twinglema (Sep 18, 2008 8:51:40 PM)
my kids friends love me!

twinglema (Sep 18, 2008 8:52:00 PM)
well, except for the neighbor brat

eg (Sep 18, 2008 8:52:09 PM)
oh he does not LOL

twinglema (Sep 18, 2008 8:52:17 PM)
nope hee hee

anna (Sep 18, 2008 8:53:51 PM)
wait until they get a boyfriend/girlfriend. then you have a bargaining chip. you need to find each kid's"currency" to bribe them with too.\

eg (Sep 18, 2008 8:54:03 PM)
true

twinglema (Sep 18, 2008 8:54:14 PM)
my sam seems to think he has a girlfriend

anna (Sep 18, 2008 8:54:25 PM)
ok, got to go feed R--will stay in and bbl

pattimom (Sep 18, 2008 8:54:27 PM)
(This user has entered DMD Parent Chat)

eg (Sep 18, 2008 8:54:30 PM)
ok anna

eg (Sep 18, 2008 8:54:33 PM)
hi pattimom

twinglema (Sep 18, 2008 8:54:41 PM)
lukes is money, sams is friends and hannahs is computer

twinglema (Sep 18, 2008 8:54:45 PM)
nite anna

eg (Sep 18, 2008 8:54:51 PM)
ok how much longer is chat on

twinglema (Sep 18, 2008 8:54:56 PM)
hi patti

twinglema (Sep 18, 2008 8:54:59 PM)
another hour

eg (Sep 18, 2008 8:55:04 PM)
ah ok

eg (Sep 18, 2008 8:55:18 PM)
I came on last week but right before it was over

eg (Sep 18, 2008 8:55:55 PM)
are you new patti

pattimom (Sep 18, 2008 8:56:24 PM)
hi, first time checking in on a chat in a long time. So what are you chatting about tonight? My son is 9 with DMD. We live in Northern NJ. Not new to DMD -- 4 years. Very involved with PPMD but looking to chat again.

twinglema (Sep 18, 2008 8:56:40 PM)
welcome patti

pattimom (Sep 18, 2008 8:56:45 PM)
thanks

twinglema (Sep 18, 2008 8:56:50 PM)
my son is 11

eg (Sep 18, 2008 8:56:52 PM)
welcome too

eg (Sep 18, 2008 8:56:56 PM)
my son is 17

twinglema (Sep 18, 2008 8:56:57 PM)
how is your son doing

pattimom (Sep 18, 2008 8:59:27 PM)
Pretty good. He just turned 9 in Aug. Plays lots of sports -- not the fastest but loves being on any team. Loves the Yankees. Has a lot of friends and is very outgoing. glad he has that kind of personality. Just started 3rd grade in town. This school is from 3 - 6 th grade. STAIRS! But they have a lift and a wing on one floor. They got him a scooter to use. We suggested the pride mobility go-go scooter that we already have and he is loving the attention from friends. Everyone in town is so supportive. Happy about that.

eg (Sep 18, 2008 9:00:03 PM)
glad all is well when was his bd?

eg (Sep 18, 2008 9:00:09 PM)
my son turned 17 aug 31

twinglema (Sep 18, 2008 9:00:20 PM)
sounds like a cool kid

pattimom (Sep 18, 2008 9:00:24 PM)
August 19. Happy Birthday to your son too. He

eg (Sep 18, 2008 9:00:42 PM)
ah yeah Happy Birthday to your son also

twinglema (Sep 18, 2008 9:00:51 PM)
happy b-day to michael

eg (Sep 18, 2008 9:01:07 PM)
ty I almost wrote he is 16 LOL

twinglema (Sep 18, 2008 9:01:31 PM)
dog justbroughtme a toy

pattimom (Sep 18, 2008 9:01:33 PM)
He's a great boy. Has not idea of the progression of this beast. Has met other boys older in chairs but really hasn't made the connection or at least mentioned he has. We have a big group in NJ and we get together every few months . A real good group of folks.

eg (Sep 18, 2008 9:01:35 PM)
he got some new contemporary glasses to wear now

eg (Sep 18, 2008 9:01:44 PM)
he wants to look older too

twinglema (Sep 18, 2008 9:02:03 PM)
send a pic eg

eg (Sep 18, 2008 9:02:11 PM)
ah ok

eg (Sep 18, 2008 9:02:21 PM)
execpt I only have a camera phone

twinglema (Sep 18, 2008 9:02:23 PM)
my son knows more than i tell him

twinglema (Sep 18, 2008 9:02:34 PM)
rats

eg (Sep 18, 2008 9:02:54 PM)
I will have to see if my daughter still has her camera

eg (Sep 18, 2008 9:03:06 PM)
brb in a bit need to eat something

twinglema (Sep 18, 2008 9:03:10 PM)
hard to type w/one hand playing tug ofwar

twinglema (Sep 18, 2008 9:03:14 PM)
i eg

bayper (Sep 18, 2008 9:03:15 PM)
pattimom.. I have a 11 year old who is very outgoing and has many, many friends and he sees his 19 year old brother who is now on a vent and really does not make the connection either.. defensive mechanism maybe or

twinglema (Sep 18, 2008 9:03:16 PM)
k

pattimom (Sep 18, 2008 9:03:20 PM)
We take him to Columbia Pres in NYC for the past four years but also took him to Cincinnati Childrens Hospital to see Dr. Wong. She is an expert on DMD and they are a center of excellence for DMD. Switched from pred. to deflazacort last NOvember due to weight gain and has not gained much in the past year.

pattimom (Sep 18, 2008 9:03:42 PM)
Interesting. Two boys -- you have quite a journey.

twinglema (Sep 18, 2008 9:03:45 PM)
my son could not tolerate pred

twinglema (Sep 18, 2008 9:04:32 PM)
i think sometimes they try to protect us

bayper (Sep 18, 2008 9:04:34 PM)
yes, a journey but one day at a time. I also have a 17 year old unaffected

momma (Sep 18, 2008 9:04:34 PM)
i have heard great things about your dr wong as we live in ohio

pattimom (Sep 18, 2008 9:04:41 PM)
my son was fine but gained way too much weight. It took about a year to really see the diff. Now he looks like a little linebacker.

twinglema (Sep 18, 2008 9:05:22 PM)
my gut is stuck at four feet tall. friends are starting to tower over him but they are good to him

bayper (Sep 18, 2008 9:05:30 PM)
neither of my boys gained weight with prednisone... actually my 11 year old could use about 20 pounds

twinglema (Sep 18, 2008 9:05:34 PM)
*guy

twinglema (Sep 18, 2008 9:05:48 PM)
my son went nuts on it

twinglema (Sep 18, 2008 9:06:47 PM)
i wonder what parents with dmdewrs in houston did or are doing

pattimom (Sep 18, 2008 9:07:03 PM)
She is so nice too. answers any e-mail on the spot. She was featured in the NY Times earlier this year. Anyone see it? Most of the NJ folks I know go out there. They are extremely thorough. Dexa Scans, bone age x-rays, cardiace MRI, everything. I leave there feeling very paid attention to. Great in NY but more of a focus on SMA and I leave there thinking I gave them more info. than they gave me. Cincinnnati was unbelievable. We go back in Dec.

pattimom (Sep 18, 2008 9:07:33 PM)
My son was like the wild man of borneo when he started on pred. First three months but then settled down. Was always a very agreeable little boy.

twinglema (Sep 18, 2008 9:07:52 PM)
mine was always a hot head and it got so much worse

twinglema (Sep 18, 2008 9:08:10 PM)
the minute we switched he snapped back to normal

momma (Sep 18, 2008 9:08:11 PM)
if kent was younger we would of went to cinn or even columbus

twinglema (Sep 18, 2008 9:08:40 PM)
too far for us i do not care for our md doc but childrens has great docs for all the other stuff

pattimom (Sep 18, 2008 9:08:58 PM)
My son, Kevin, does have the impulsiveness thing in class too. Any of yours? He also says 'his mind tells him to say things that aren't nice but he tries to control it. Does a good job but "the thing in his mind" worries me.

pattimom (Sep 18, 2008 9:09:51 PM)
momma, where do you go?

twinglema (Sep 18, 2008 9:09:55 PM)
um yes, mine is impulsive to say the least

momma (Sep 18, 2008 9:10:06 PM)
well toledo ohio

twinglema (Sep 18, 2008 9:10:11 PM)
sometimes his teacher says he is more like first grader and he is in 6th

pattimom (Sep 18, 2008 9:10:54 PM)
right now kevin is pretty much like the rest though. Even the kids without DMD can be a little impulsive in 3rd grade.

twinglema (Sep 18, 2008 9:10:56 PM)
maybe that is just his way of explaining doing stuff he isnt supposed to do

momma (Sep 18, 2008 9:10:56 PM)
but not to happy with it so we found other dr that were willing to help and do what kent needs and wants

twinglema (Sep 18, 2008 9:11:09 PM)
thats kinda what we do too momma

twinglema (Sep 18, 2008 9:11:27 PM)
wish there was more consistent care for md

pattimom (Sep 18, 2008 9:11:31 PM)
It's a shame so many docs really don't have a clue about DMD, even at MDA clinics.

momma (Sep 18, 2008 9:11:57 PM)
i agree patti

twinglema (Sep 18, 2008 9:11:58 PM)
ours told us go home and enjoy himn cuz he will only live into late teens

momma (Sep 18, 2008 9:12:21 PM)
pretty much same here but lok kents 22 !

twinglema (Sep 18, 2008 9:12:25 PM)
i should ahve our older boys e-mail her

pattimom (Sep 18, 2008 9:12:30 PM)
Standards of care are being worked on. Dr. wong is setting the standard of care and few other hospitals are replicating her. CHOP (Children's Hospital of Philadelphia), Boston, a few others.

twinglema (Sep 18, 2008 9:12:48 PM)
tell her to call the clinic in omaha

twinglema (Sep 18, 2008 9:13:01 PM)
most dmd parents go out of state here

pattimom (Sep 18, 2008 9:13:06 PM)
Twinglema, Unacceptable for them to tell you that. They are not with it and should not be treating DMD.

momma (Sep 18, 2008 9:13:15 PM)
i cant see dr here follow ant standard of care they egos are way to fat!

twinglema (Sep 18, 2008 9:13:18 PM)
oh, i know

twinglema (Sep 18, 2008 9:13:38 PM)
i called ppmd the moment we got home

twinglema (Sep 18, 2008 9:14:08 PM)
she also still insists there is not diff between pred and deflaz

twinglema (Sep 18, 2008 9:14:36 PM)
ppmd put me in touch with dr bigger and we did what he said

pattimom (Sep 18, 2008 9:16:16 PM)
Every year we go to the PPMD conference -- this year in Philly. Our fourth. Absolutely could not live without that conf. Hundreds of DMD parents, all the researchers, PT's, Nutritionist, school specialists, Dr. Wong and Dr. Biggar (wonderful, have spoken with him) all there. It's a four-day conf. -- exhausting but fantastic. PPMD has a teacher's guide and Gym teacher's guide which I give to teachers.

momma (Sep 18, 2008 9:16:25 PM)
i thought mda clinics would have a pulmonary dr and cardiac dr but i was told the hospital wasnt big enough for all thier egos!

twinglema (Sep 18, 2008 9:16:38 PM)
i do that too

pattimom (Sep 18, 2008 9:16:46 PM)
Pred. and Deflaz do the same but deflaz has less side effects, especially weight gain.

momma (Sep 18, 2008 9:16:58 PM)
that came from a nurse at clinic!

twinglema (Sep 18, 2008 9:17:03 PM)
some clinics have them all but ours only has neuro, pt, ot

twinglema (Sep 18, 2008 9:17:23 PM)
doc hetre thinks side effects are sme

twinglema (Sep 18, 2008 9:17:26 PM)
same

pattimom (Sep 18, 2008 9:17:34 PM)
Columbia Pres. in NYC has given him PFT and ekg and echo. but not up on everything. And we are talking NYC. People come from all over the world to Columbia

momma (Sep 18, 2008 9:18:34 PM)
here it like the have a standard and dont go outside the box afarid to learn something new i guess

pattimom (Sep 18, 2008 9:19:02 PM)
Has anyone gone to D.C. Have gone two years in a row with PPMD and we saw all our reps. Really pushing the MDCARe act resinstatement and having success. Ryan Lochte, the olympic swimmer just went to D.C. to push for this. He has a relative that died from DMD.

twinglema (Sep 18, 2008 9:19:55 PM)
i have not

pattimom (Sep 18, 2008 9:20:52 PM)
My case of DMD is hereditary but we did not know that. My mom had a brother that died in 1944 and she always said polio or 'progressive paralysis' . They were poor immigrants from Ireland and he spent most of his life in a hospital. I feel so bad. Had Kevin at 44 and I am an only child, hence my mom just passed on the defective gene to me. Maybe if she had a son, we woud have known more. Kevin is our only child.

pattimom (Sep 18, 2008 9:21:17 PM)
I get a lot of satisfaction from my involvement with so many others. It helps a lot. Anyone in NJ/NY area?

twinglema (Sep 18, 2008 9:21:42 PM)
we do not know if it started before me or not. no one else has had it but there were very few men born in our family

twinglema (Sep 18, 2008 9:21:53 PM)
NE here

pattimom (Sep 18, 2008 9:22:14 PM)
Is that Nebraska? Or New England?

bayper (Sep 18, 2008 9:22:22 PM)
NY

twinglema (Sep 18, 2008 9:22:26 PM)
nebraska

pattimom (Sep 18, 2008 9:23:24 PM)
Ok. I know a number of families from ny. Just met a firefighter in Philly at the conf. He collects for the NYC area firefighters and he was on the telethon this year. Their son is 5. Nice people. We plan to get together.

bayper (Sep 18, 2008 9:24:04 PM)
I am just south of the adirondacks

twinglema (Sep 18, 2008 9:24:53 PM)
bet it is pretty there

pattimom (Sep 18, 2008 9:25:14 PM)
Unfortunately, I am going to have to sign off. Got home from back to school night and have not gotten my son to bed. Very bad. got on here instead. I used to go up to the adir0ondacks in the 70s with an old boyfriendl. His uncle had a cabin up at Inlet and now he owns the place I hear. Beautiful up there.

twinglema (Sep 18, 2008 9:25:39 PM)
ty for coming patti mom

twinglema (Sep 18, 2008 9:25:44 PM)
take care

bayper (Sep 18, 2008 9:25:44 PM)
it is pretty, but I think we are in for a hard winter

bayper (Sep 18, 2008 9:25:58 PM)
by pattimom..come back soon

twinglema (Sep 18, 2008 9:25:58 PM)
we are having indian summer already

bayper (Sep 18, 2008 9:26:11 PM)
tonight we are in the 30s

momma (Sep 18, 2008 9:26:27 PM)
brr bayper

momma (Sep 18, 2008 9:26:39 PM)
tommrow 80 here

twinglema (Sep 18, 2008 9:26:50 PM)
here too

twinglema (Sep 18, 2008 9:27:03 PM)
i could use a nite of thirties to kill the pollen

pattimom (Sep 18, 2008 9:27:10 PM)
I'll come back next weekand hope to chat more. Hang in there all. Hate to keep harping on it but check out the ppmd website. It's really great for parents on a grass roots level. it was 75 here today. Nice Indian summer here to. Sunday it was 90 and hot aat my son's soccer game. As you can see, I talk (type) a lot. Thank God I type fast.

bayper (Sep 18, 2008 9:27:24 PM)
the days have been nice and sunny in the upper 70s. finally it has been nice during the day... we spent August in rain

momma (Sep 18, 2008 9:27:43 PM)
i wan to move somewhere warm but no hurricanes or floods

pattimom (Sep 18, 2008 9:27:51 PM)
Next week would like to talk about one level homes and what type of homes you all have.

momma (Sep 18, 2008 9:27:52 PM)
so not sure where i would move

twinglema (Sep 18, 2008 9:27:56 PM)
does that exist? desert?

pattimom (Sep 18, 2008 9:28:05 PM)
Virginia is nice.

momma (Sep 18, 2008 9:28:27 PM)
it just so hard on kent in the cold

twinglema (Sep 18, 2008 9:28:29 PM)
i would move to bahamas in aminute

twinglema (Sep 18, 2008 9:28:36 PM)
just need good evac plan

momma (Sep 18, 2008 9:28:47 PM)
we'll probably just be house hermits lol

bayper (Sep 18, 2008 9:29:01 PM)
winter is tough...

pattimom (Sep 18, 2008 9:29:03 PM)
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momma (Sep 18, 2008 9:29:09 PM)
yea

eg (Sep 18, 2008 9:29:48 PM)
back for a min

momma (Sep 18, 2008 9:29:56 PM)
farmers alminac say clod snowy winter here :(

bayper (Sep 18, 2008 9:29:57 PM)
but my 11 year old still loves the snow... he actually goes skiing in the winter

momma (Sep 18, 2008 9:30:18 PM)
thats cool bayper

twinglema (Sep 18, 2008 9:30:36 PM)
luke loves to sled he just does not like the coming back up part

eg (Sep 18, 2008 9:30:52 PM)
its too hot here for snow

bayper (Sep 18, 2008 9:30:55 PM)
we have a double H camp here and they have a ski slope and snow makers, not that we always need them and m boy ski in these bi-skis...it is sooo cool

momma (Sep 18, 2008 9:30:57 PM)
kent use to like to make snow men

twinglema (Sep 18, 2008 9:31:08 PM)
my kids do too

twinglema (Sep 18, 2008 9:31:25 PM)
and snow ice cream

eg (Sep 18, 2008 9:31:30 PM)
you all can share the snow with me

momma (Sep 18, 2008 9:32:04 PM)
i come and visit eg ill bring ya some snow lol

eg (Sep 18, 2008 9:32:23 PM)
ok LOL

momma (Sep 18, 2008 9:32:35 PM)
how cold do you get egin the winter?

twinglema (Sep 18, 2008 9:32:36 PM)
when we were in san diego my dad went into mountains and brought down trunk full of snew

twinglema (Sep 18, 2008 9:32:49 PM)
the cali kids din't know what to do w/it

eg (Sep 18, 2008 9:33:05 PM)
not very

eg (Sep 18, 2008 9:33:18 PM)
25 at night is cold here

eg (Sep 18, 2008 9:33:50 PM)
the coldest it gets here at night is lower 20's

momma (Sep 18, 2008 9:34:07 PM)
thats not to bad we get single digits to way below zero

twinglema (Sep 18, 2008 9:34:10 PM)
it gets that cold there ??

bayper (Sep 18, 2008 9:34:18 PM)
I need to move... last year we spent many many a day below zero

twinglema (Sep 18, 2008 9:34:20 PM)
here too momma we are tough

twinglema (Sep 18, 2008 9:34:31 PM)
but nothing like snuggling up w/ cocoa and a fire

momma (Sep 18, 2008 9:34:41 PM)
yea hear us roarrr ! lol

twinglema (Sep 18, 2008 9:34:59 PM)
the kids used to lay on floor with feet up on fireplace ledge

eg (Sep 18, 2008 9:34:59 PM)
its nice that it does not get too cold here but sometimes snow would be nice

bayper (Sep 18, 2008 9:35:08 PM)
I love a good fire but can't have them because of my kids allergies and he vent...

bayper (Sep 18, 2008 9:35:13 PM)
the vent

twinglema (Sep 18, 2008 9:35:16 PM)
picture of 6 little feet in front of fire was x-mas card one year

eg (Sep 18, 2008 9:35:33 PM)
we snuggle with cocoa in front of the tv LOL

momma (Sep 18, 2008 9:35:36 PM)
yea not good for respratory we had to get rid of fire place

twinglema (Sep 18, 2008 9:35:36 PM)
we switched to gas fire after powere outage

twinglema (Sep 18, 2008 9:35:48 PM)
can we still use gas?

eg (Sep 18, 2008 9:35:49 PM)
cute pic twingle

twinglema (Sep 18, 2008 9:36:02 PM)
inside it said toe toe toe merry christmas

twinglema (Sep 18, 2008 9:36:26 PM)
how do you do xmas w/ no snow or cold

eg (Sep 18, 2008 9:36:39 PM)
we still do

eg (Sep 18, 2008 9:36:48 PM)
baking etc

eg (Sep 18, 2008 9:37:12 PM)
eating mostly

momma (Sep 18, 2008 9:37:19 PM)
speaking of baking my hubby just made zucchini bead

eg (Sep 18, 2008 9:37:25 PM)
yum

twinglema (Sep 18, 2008 9:37:27 PM)
yummo

momma (Sep 18, 2008 9:37:27 PM)
i wish you could smell it

eg (Sep 18, 2008 9:37:35 PM)
I can LOL

eg (Sep 18, 2008 9:37:41 PM)
at least I remember how it smells

momma (Sep 18, 2008 9:37:47 PM)
lol

eg (Sep 18, 2008 9:38:01 PM)
wish my hubby would do more cooking

twinglema (Sep 18, 2008 9:38:03 PM)
never made it but sounds good

twinglema (Sep 18, 2008 9:38:11 PM)
wow a baking hubby how cool

eg (Sep 18, 2008 9:38:16 PM)
I also love pumpkin bread

twinglema (Sep 18, 2008 9:38:27 PM)
one of my sons is our designated brownie maker

twinglema (Sep 18, 2008 9:38:41 PM)
i amke a good pumkin cranberry bread

momma (Sep 18, 2008 9:38:54 PM)
sounds good twingle

eg (Sep 18, 2008 9:38:57 PM)
michael loves to watch me make chocolate chip cookies his fav

twinglema (Sep 18, 2008 9:39:01 PM)
bayper still here?

eg (Sep 18, 2008 9:39:03 PM)
never tried

bayper (Sep 18, 2008 9:39:11 PM)
i don't bake much... leave that to my 17 year old

momma (Sep 18, 2008 9:39:11 PM)
kent too eg

twinglema (Sep 18, 2008 9:39:28 PM)
hubbys mom only baked at xmas-poor guy thought choco chip WERE xmas cookies

momma (Sep 18, 2008 9:39:34 PM)
lol

eg (Sep 18, 2008 9:39:44 PM)
I have baked every since I was 13 yrs old

twinglema (Sep 18, 2008 9:40:06 PM)
where does your 17 year old work bayper

eg (Sep 18, 2008 9:40:09 PM)
oh did he

twinglema (Sep 18, 2008 9:40:15 PM)
and can i ask what bayper means?

bayper (Sep 18, 2008 9:40:28 PM)
at a pizza place

twinglema (Sep 18, 2008 9:40:35 PM)
hubby thought i was nouts making cookies in the summer

momma (Sep 18, 2008 9:40:39 PM)
we have a fall fest in town this sat and they have a quick bread contest hubby and i both are gonna bake bread

bayper (Sep 18, 2008 9:40:44 PM)
it has to do with sailing

twinglema (Sep 18, 2008 9:40:45 PM)
i did that, i bet we all did!

eg (Sep 18, 2008 9:40:51 PM)
gets too hot here to bake

twinglema (Sep 18, 2008 9:40:56 PM)
i bet eg

twinglema (Sep 18, 2008 9:41:05 PM)
your house have ac now?

eg (Sep 18, 2008 9:41:21 PM)
cool momma let us know how you do

momma (Sep 18, 2008 9:41:30 PM)
yea i will

eg (Sep 18, 2008 9:41:31 PM)
we want to go to apple annies here

eg (Sep 18, 2008 9:41:32 PM)
in oct

eg (Sep 18, 2008 9:41:38 PM)
for apples and pumpkins

eg (Sep 18, 2008 9:41:49 PM)
they also make apple wood hamburgers

twinglema (Sep 18, 2008 9:41:53 PM)
sounds like fun eg

eg (Sep 18, 2008 9:41:57 PM)
yeah it is

eg (Sep 18, 2008 9:42:13 PM)
brb

twinglema (Sep 18, 2008 9:42:17 PM)
k

twinglema (Sep 18, 2008 9:44:17 PM)
my we got quite

bayper (Sep 18, 2008 9:44:43 PM)
did I answer your question?

twinglema (Sep 18, 2008 9:45:16 PM)
which one lol

momma (Sep 18, 2008 9:45:18 PM)
sorry sampling hubbies brd

anna (Sep 18, 2008 9:45:20 PM)
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twinglema (Sep 18, 2008 9:45:24 PM)
is it good

momma (Sep 18, 2008 9:45:30 PM)
yummy

twinglema (Sep 18, 2008 9:45:31 PM)
gee, ty for sharing

bayper (Sep 18, 2008 9:45:35 PM)
what bayper means

twinglema (Sep 18, 2008 9:45:39 PM)
no

anna (Sep 18, 2008 9:45:40 PM)
(This user has entered DMD Parent Chat)

twinglema (Sep 18, 2008 9:45:44 PM)
wb anna

twinglema (Sep 18, 2008 9:46:35 PM)
i have never sailed what is bayper part of?

anna (Sep 18, 2008 9:46:41 PM)
ok--had to switch so R could talk to friend

twinglema (Sep 18, 2008 9:46:46 PM)
you sail alot?sounds like fun

twinglema (Sep 18, 2008 9:47:00 PM)
R ok?

bayper (Sep 18, 2008 9:47:02 PM)
my family had a boat named bayper and it is about havingn no wind to sail

twinglema (Sep 18, 2008 9:47:20 PM)
ahh, clear as mud to a midwest girl

anna (Sep 18, 2008 9:47:21 PM)
he is fine, but tired I think

bayper (Sep 18, 2008 9:47:27 PM)
I miss the water... we used to boat alot as a family so I used that for my name

anna (Sep 18, 2008 9:47:32 PM)
I will put him in bed soon

twinglema (Sep 18, 2008 9:47:39 PM)
i have siled in connecticut when visiting friends

anna (Sep 18, 2008 9:47:52 PM)
if you want water come visit me in Seattle or in home on ocean

twinglema (Sep 18, 2008 9:47:53 PM)
i wasnt very good at it but hubby was a natural

bayper (Sep 18, 2008 9:48:02 PM)
This is the first summer I was unable to get near the water. I have a pool but it was not the same

twinglema (Sep 18, 2008 9:48:10 PM)
i would love to live near ocean

twinglema (Sep 18, 2008 9:48:23 PM)
why no water bayper?

anna (Sep 18, 2008 9:48:28 PM)
not if they kept threatening you with tsunami

bayper (Sep 18, 2008 9:48:30 PM)
my husband hates to sail... I love the water, lakes, ocean

twinglema (Sep 18, 2008 9:48:36 PM)
me too

twinglema (Sep 18, 2008 9:49:10 PM)
esp ocean

bayper (Sep 18, 2008 9:49:28 PM)
we have a camper in the adirondacks,actually on lake george...but since my husband had surgery in June we did not make it there., plus matt did n ot want to go since the vent... but we will be back next year

twinglema (Sep 18, 2008 9:49:52 PM)
i was in long island when tropical storm ffloyd went through

eg (Sep 18, 2008 9:49:54 PM)
back

anna (Sep 18, 2008 9:49:55 PM)
one summer for vacation we rented boat with boom and tied R to boom and swung him into/out of boat

twinglema (Sep 18, 2008 9:50:10 PM)
ahhhh!

anna (Sep 18, 2008 9:50:17 PM)
went to Canada

anna (Sep 18, 2008 9:50:39 PM)
for a week. I got so seasick

twinglema (Sep 18, 2008 9:50:41 PM)
the boat we were on actually belted hubby to it. not good if it sunk i thought (he is in wc bayper)

momma (Sep 18, 2008 9:50:48 PM)
well ladies gotta get kent to bed

twinglema (Sep 18, 2008 9:50:53 PM)
k momma

twinglema (Sep 18, 2008 9:50:57 PM)
have a great weekend

anna (Sep 18, 2008 9:50:57 PM)
night momma

bayper (Sep 18, 2008 9:50:59 PM)
we did some stuff like that with M up until he was 16 we actually went camping on the islands...we took M's manual chair

momma (Sep 18, 2008 9:51:07 PM)
night have a great weekend all

eg (Sep 18, 2008 9:51:08 PM)
night momma

bayper (Sep 18, 2008 9:51:12 PM)
night

momma (Sep 18, 2008 9:51:13 PM)
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anna (Sep 18, 2008 9:51:20 PM)
now we cannot camp unless we took noisy generator

twinglema (Sep 18, 2008 9:51:20 PM)
how much water u got eg lol

twinglema (Sep 18, 2008 9:51:42 PM)
what did parents with dmd kids do in houston?

eg (Sep 18, 2008 9:51:46 PM)
michael does not like to go anywhere overnight

twinglema (Sep 18, 2008 9:51:55 PM)
i would hope they left, dont gen use gas?

anna (Sep 18, 2008 9:51:58 PM)
we have a lovely view of Lake Washington since hiway project took down some huge trees

eg (Sep 18, 2008 9:52:11 PM)
u mean rain twingle?

twinglema (Sep 18, 2008 9:52:13 PM)
a home or in seattle anna?

anna (Sep 18, 2008 9:52:25 PM)
here near Seattle

twinglema (Sep 18, 2008 9:52:32 PM)
or lakes, ocean etc

anna (Sep 18, 2008 9:52:46 PM)
where is my "home'? wherever R is I guess

twinglema (Sep 18, 2008 9:52:54 PM)
pretty dry there isnt it?

anna (Sep 18, 2008 9:53:02 PM)
not today!

twinglema (Sep 18, 2008 9:53:09 PM)
i meant eg, anna

eg (Sep 18, 2008 9:53:10 PM)
we have lakes nearby

anna (Sep 18, 2008 9:53:17 PM)
fall leaves are appearing

twinglema (Sep 18, 2008 9:53:28 PM)
really? guess i just pictured tumblewweds and sand lol

twinglema (Sep 18, 2008 9:53:44 PM)
here too. some trees are "naked" as kids call them

twinglema (Sep 18, 2008 9:53:47 PM)
too soon

eg (Sep 18, 2008 9:53:48 PM)
we are pretty dry although we had a good monsoon season

anna (Sep 18, 2008 9:54:17 PM)
when it rains here we park under R's building to stay dry

eg (Sep 18, 2008 9:54:37 PM)
LOL twingle

eg (Sep 18, 2008 9:54:45 PM)
we do have cactus

bayper (Sep 18, 2008 9:55:04 PM)
gotta go... night all

eg (Sep 18, 2008 9:55:08 PM)
night bayper

anna (Sep 18, 2008 9:55:08 PM)
my daughter passed thru today and I didn't get to see them

anna (Sep 18, 2008 9:55:13 PM)
night bayper

twinglema (Sep 18, 2008 9:55:13 PM)
nite bayper hope to see ya soon

eg (Sep 18, 2008 9:55:17 PM)
aw why not anna

bayper (Sep 18, 2008 9:55:19 PM)
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twinglema (Sep 18, 2008 9:55:23 PM)
aww, why not anna

twinglema (Sep 18, 2008 9:55:30 PM)
LOL

anna (Sep 18, 2008 9:55:44 PM)
her f-i-l passed away suddenly and they went to our hometown to bury him

eg (Sep 18, 2008 9:55:48 PM)
double trouble twingle LOL

twinglema (Sep 18, 2008 9:56:13 PM)
ah, sorry about fil

eg (Sep 18, 2008 9:56:20 PM)
oh

twinglema (Sep 18, 2008 9:56:25 PM)
i already have double trouble!

eg (Sep 18, 2008 9:56:27 PM)
sorry to hear

anna (Sep 18, 2008 9:56:32 PM)
he died eating dinner alone on Sunday and they found him Tuesday

eg (Sep 18, 2008 9:56:49 PM)
yeah guess u do

eg (Sep 18, 2008 9:56:57 PM)
he lived alone?

anna (Sep 18, 2008 9:57:01 PM)
yes

eg (Sep 18, 2008 9:57:10 PM)
thats sad 2 days

twinglema (Sep 18, 2008 9:57:12 PM)
aww, that is sad

anna (Sep 18, 2008 9:57:22 PM)
he was younger than I am

twinglema (Sep 18, 2008 9:57:27 PM)
wow

twinglema (Sep 18, 2008 9:57:30 PM)
heart?

anna (Sep 18, 2008 9:57:37 PM)
don't know

eg (Sep 18, 2008 9:57:38 PM)
oh he was

anna (Sep 18, 2008 9:58:26 PM)
he had just gone camping with his son last week, and I am so glad

anna (Sep 18, 2008 9:58:37 PM)
he didn't tell anyone he had lung cancer

eg (Sep 18, 2008 9:58:38 PM)
yeah good he spent time with him

eg (Sep 18, 2008 9:58:46 PM)
oh he had cancer

eg (Sep 18, 2008 9:58:50 PM)
not even his son

twinglema (Sep 18, 2008 9:58:54 PM)
wow

anna (Sep 18, 2008 9:58:58 PM)
no, he had just found out

eg (Sep 18, 2008 9:59:15 PM)
oh

anna (Sep 18, 2008 9:59:37 PM)
had not gone for any treatment yet--not sure wht he died of

eg (Sep 18, 2008 9:59:44 PM)
hmm

eg (Sep 18, 2008 9:59:49 PM)
so he was just diagnosed

eg (Sep 18, 2008 9:59:54 PM)
will they do autopsy

anna (Sep 18, 2008 10:00:24 PM)
I guess the coroner says no need to know.....they will just bury him

eg (Sep 18, 2008 10:00:30 PM)
oh

eg (Sep 18, 2008 10:02:37 PM)
I need to get to store goodnight everyone have a good weekend

twinglema (Sep 18, 2008 10:02:48 PM)
k night eg

twinglema (Sep 18, 2008 10:02:53 PM)
glad u r back

eg (Sep 18, 2008 10:03:03 PM)
yeah me too I will try to come back on regulary

eg (Sep 18, 2008 10:03:10 PM)
regularly

twinglema (Sep 18, 2008 10:03:14 PM)
is doc appt tomorrow a check up anna

twinglema (Sep 18, 2008 10:03:23 PM)
hope so eg :)

eg (Sep 18, 2008 10:03:29 PM)
ok spelling does not count LOL

twinglema (Sep 18, 2008 10:03:36 PM)
nope

eg (Sep 18, 2008 10:03:39 PM)
night

twinglema (Sep 18, 2008 10:03:41 PM)
nite

eg (Sep 18, 2008 10:04:03 PM)
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twinglema (Sep 18, 2008 10:04:30 PM)
hope all goes well w/ dr tomorrow anna

anna (Sep 18, 2008 10:04:43 PM)
ty

anna (Sep 18, 2008 10:04:58 PM)
oops--forgot I was on chat and went to do something else!

twinglema (Sep 18, 2008 10:05:33 PM)
lol

twinglema (Sep 18, 2008 10:05:44 PM)
we should prob call it anite

anna (Sep 18, 2008 10:05:50 PM)
guess I need to go

twinglema (Sep 18, 2008 10:05:53 PM)
k anna

anna (Sep 18, 2008 10:05:59 PM)
ok, have a great weekend

twinglema (Sep 18, 2008 10:06:01 PM)
hope R improves every day

twinglema (Sep 18, 2008 10:06:04 PM)
u too

anna (Sep 18, 2008 10:06:07 PM)
thanks--he will

twinglema (Sep 18, 2008 10:06:14 PM)
nite

anna (Sep 18, 2008 10:06:21 PM)
nite

anna (Sep 18, 2008 10:06:23 PM)
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twinglema (Sep 18, 2008 10:06:33 PM)
(This user has left DigiChat)