DMD Parent Chat

twinglema (Dec 30, 2008 8:05:47 PM)
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twinglema (Dec 30, 2008 8:05:55 PM)
hi momma

momma (Dec 30, 2008 8:06:06 PM)
hi twingle

momma (Dec 30, 2008 8:06:28 PM)
hope all is wel at you house ?

momma (Dec 30, 2008 8:06:46 PM)
well

twinglema (Dec 30, 2008 8:06:56 PM)
yes except for malfunctioning guitar hero

momma (Dec 30, 2008 8:07:03 PM)
oh no

twinglema (Dec 30, 2008 8:07:18 PM)
and no one seems to answer phone there

twinglema (Dec 30, 2008 8:07:38 PM)
how are all of you, and how was xmas?

momma (Dec 30, 2008 8:07:45 PM)
my hubbies grown nieces And newphews got those for christmas

momma (Dec 30, 2008 8:08:09 PM)
it went well but glad it behind us

momma (Dec 30, 2008 8:08:38 PM)
this yr i felt like bah humbug for some reason

twinglema (Dec 30, 2008 8:08:49 PM)
ahhh! i talked to a real perosn!

may (Dec 30, 2008 8:08:54 PM)
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twinglema (Dec 30, 2008 8:08:57 PM)
sorry

twinglema (Dec 30, 2008 8:08:59 PM)
hi may

momma (Dec 30, 2008 8:09:02 PM)
hi may

twinglema (Dec 30, 2008 8:09:16 PM)
i found one so all we have to do is return!

twinglema (Dec 30, 2008 8:09:26 PM)
how have you been may?

may (Dec 30, 2008 8:09:27 PM)
hi

twinglema (Dec 30, 2008 8:09:59 PM)
all i can say about guitar horo is i am sick of Pat Benetar singing heartbreaker!

momma (Dec 30, 2008 8:10:07 PM)
lol

twinglema (Dec 30, 2008 8:10:20 PM)
hero lol, although it is more like horror!

may (Dec 30, 2008 8:10:24 PM)
pretty good corey has been sick, how are you?

momma (Dec 30, 2008 8:10:43 PM)
hubbie family has big parties wjth that game and they do bowling alot too

twinglema (Dec 30, 2008 8:10:47 PM)
what is wrong with corey?

twinglema (Dec 30, 2008 8:11:17 PM)
btw i can only stay on till hubby gets home as he has to work

may (Dec 30, 2008 8:11:23 PM)
almost died in er too much oxygen he is recovering

twinglema (Dec 30, 2008 8:11:43 PM)
oh my god

momma (Dec 30, 2008 8:11:43 PM)
oh no why did he have ox to begin with

momma (Dec 30, 2008 8:12:04 PM)
remind me may ho wold is he?

twinglema (Dec 30, 2008 8:12:15 PM)
nice spelling momma

momma (Dec 30, 2008 8:12:16 PM)
old is he*

momma (Dec 30, 2008 8:12:20 PM)
yea

twinglema (Dec 30, 2008 8:12:27 PM)
teasing

may (Dec 30, 2008 8:12:29 PM)
he was alone with his brother and things were not understood he is 21

momma (Dec 30, 2008 8:12:31 PM)
yea

momma (Dec 30, 2008 8:12:44 PM)
oh i see

momma (Dec 30, 2008 8:13:38 PM)
he s doing ok now right ?

anna (Dec 30, 2008 8:13:47 PM)
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momma (Dec 30, 2008 8:13:52 PM)
hi anna

twinglema (Dec 30, 2008 8:13:53 PM)
hey anna

anna (Dec 30, 2008 8:13:56 PM)
Hi

twinglema (Dec 30, 2008 8:14:00 PM)
how was christmas?

may (Dec 30, 2008 8:14:06 PM)
yes he is doing much better thanks

momma (Dec 30, 2008 8:14:13 PM)
good to hear

momma (Dec 30, 2008 8:14:26 PM)
doers he always use ox may?

anna (Dec 30, 2008 8:14:36 PM)
was May's son sick?

twinglema (Dec 30, 2008 8:14:46 PM)
so what do we have to do to prevent docs from doing that?

momma (Dec 30, 2008 8:14:59 PM)
does * sorry bout my typing :)

may (Dec 30, 2008 8:15:09 PM)
yes almost died er

anna (Dec 30, 2008 8:15:20 PM)
we survived white Christmas--but still no trash pick-up

twinglema (Dec 30, 2008 8:15:27 PM)
ick

momma (Dec 30, 2008 8:15:32 PM)
get smelly anna?

anna (Dec 30, 2008 8:15:47 PM)
no, very cold, tg

twinglema (Dec 30, 2008 8:15:49 PM)
do i need to get luke a tatoo that says no oxygen?

momma (Dec 30, 2008 8:15:57 PM)
we have had a nice break from snow

momma (Dec 30, 2008 8:16:04 PM)
ya better twingle

may (Dec 30, 2008 8:16:05 PM)
thats a good idea

anna (Dec 30, 2008 8:16:08 PM)
I want to hear about May's son--they put him on oxygen in ER?

twinglema (Dec 30, 2008 8:16:18 PM)
we were freezing christmas eve, ok on xmas day then 50s on friday!

twinglema (Dec 30, 2008 8:16:25 PM)
yes anna

anna (Dec 30, 2008 8:16:34 PM)
wind 55 mph yesterday

twinglema (Dec 30, 2008 8:16:42 PM)
it is ridiculaous docs do not know that

anna (Dec 30, 2008 8:16:53 PM)
and how is he now mAY?

may (Dec 30, 2008 8:16:56 PM)
yes his brother was with him in the er there was a lack of communication

momma (Dec 30, 2008 8:17:26 PM)
i was told at thehospital once that if kent dropped below 90 theyd put ox 0on him i told them over my dead body

twinglema (Dec 30, 2008 8:17:48 PM)
so what are they supposed to give them instead of o2?

may (Dec 30, 2008 8:17:53 PM)
he is doing well he had to stay in intensive care for 6 days it took them an hour to wake him up

anna (Dec 30, 2008 8:18:00 PM)
my son has ID card from Dr. Bach's site that gives emergency instructions about o2

momma (Dec 30, 2008 8:18:17 PM)
that doent work any more anna

twinglema (Dec 30, 2008 8:18:22 PM)
why?

twinglema (Dec 30, 2008 8:18:39 PM)
so what ARE they supposed to give them?

may (Dec 30, 2008 8:18:52 PM)
we had one made last week

anna (Dec 30, 2008 8:18:54 PM)
bi-pap, to prevent 02 buildup which makes them sleepy and then stop breathing

momma (Dec 30, 2008 8:19:03 PM)
it says its broke and not goi9ng to be fixed anytime soon

anna (Dec 30, 2008 8:19:18 PM)
too bad, I was going to remake one

anna (Dec 30, 2008 8:19:46 PM)
but, you can still write some instructions to put in wallet

may (Dec 30, 2008 8:19:57 PM)
it was just a suprise he seemed fine

momma (Dec 30, 2008 8:20:00 PM)
well thier s a reason for it to drop if hes not cirulation room air how would they process ox

momma (Dec 30, 2008 8:20:13 PM)
yea good idea ann

momma (Dec 30, 2008 8:20:16 PM)
anna

twinglema (Dec 30, 2008 8:20:49 PM)
so say luke has surgery. am i supposed to tell them to put him on bi pap?

may (Dec 30, 2008 8:21:08 PM)
he now has bi pap

momma (Dec 30, 2008 8:21:26 PM)
well i dont think luke would need bipap

anna (Dec 30, 2008 8:21:29 PM)
they intubate for surgery

anna (Dec 30, 2008 8:21:58 PM)
R did use his v-pap during feeding tube placement with RT standing by

momma (Dec 30, 2008 8:22:23 PM)
kent had surgery before breathing issues he did ok

anna (Dec 30, 2008 8:22:26 PM)
May, is it time for NIV for your son?

momma (Dec 30, 2008 8:22:30 PM)
keny did too anna

twinglema (Dec 30, 2008 8:22:48 PM)
i mean down the road

momma (Dec 30, 2008 8:22:57 PM)
kent * cant even type kents name

may (Dec 30, 2008 8:23:03 PM)
Yes he has the bi pap and is doing okay right now

anna (Dec 30, 2008 8:23:13 PM)
just at night?

may (Dec 30, 2008 8:23:20 PM)
yes

momma (Dec 30, 2008 8:23:24 PM)
so why was he at er to begin with

twinglema (Dec 30, 2008 8:23:34 PM)
seems like every time i go to hosp they put me on o2

anna (Dec 30, 2008 8:23:35 PM)
ok, sorry he was so sick

may (Dec 30, 2008 8:24:30 PM)
he told his brother he was short of breath so he called the ambulance and they put him on oxygen

may (Dec 30, 2008 8:24:50 PM)
I was at a wedding when i got the call

momma (Dec 30, 2008 8:24:54 PM)
oh i see

anna (Dec 30, 2008 8:25:04 PM)
I just moved my Mom to her new adult family home and just got in, so will have to leave soon. brother didn't know to put him on bi-pap?

momma (Dec 30, 2008 8:25:39 PM)
has he been using breathing help during the day now sence the incodent?

twinglema (Dec 30, 2008 8:25:58 PM)
why did mom move

may (Dec 30, 2008 8:25:58 PM)
when he thinks he needs it

momma (Dec 30, 2008 8:26:09 PM)
i see

momma (Dec 30, 2008 8:26:28 PM)
well i glad he better

may (Dec 30, 2008 8:26:37 PM)
thanks me too

anna (Dec 30, 2008 8:26:41 PM)
when he needs it gradually more and more it is time to think about a sip vent.(if that is the direction he wants to go that is)

momma (Dec 30, 2008 8:26:46 PM)
do you have pluse ox

may (Dec 30, 2008 8:27:14 PM)
yes he has said thats what he wants

anna (Dec 30, 2008 8:27:30 PM)
is his pulmonologist on-board for that?

may (Dec 30, 2008 8:27:30 PM)
no should i

momma (Dec 30, 2008 8:27:34 PM)
mabey check him when hes feeling shorth of breath

momma (Dec 30, 2008 8:27:54 PM)
sorry for all the questions

may (Dec 30, 2008 8:27:55 PM)
yes the pulmonologist is great

may (Dec 30, 2008 8:28:07 PM)
I don't mind

momma (Dec 30, 2008 8:28:17 PM)
just worry bout our boys and youg men

anna (Dec 30, 2008 8:28:34 PM)
you should have a pulse ox, a suction device, and ambu bag all availiable now(as soon as bi-pap use begins)

twinglema (Dec 30, 2008 8:28:44 PM)
so in er situation do they put duchenne boys on bi-pap

may (Dec 30, 2008 8:28:44 PM)
how are your boys doing

momma (Dec 30, 2008 8:28:59 PM)
mine is great

anna (Dec 30, 2008 8:28:59 PM)
we just don't want anyone to go thru what Momma's son did to get his niv

momma (Dec 30, 2008 8:29:09 PM)
yea

momma (Dec 30, 2008 8:29:12 PM)
for sure

anna (Dec 30, 2008 8:29:20 PM)
my son on break from Microsoft still

may (Dec 30, 2008 8:29:27 PM)
thanks for the information anna i will see that he gets eveything

anna (Dec 30, 2008 8:29:47 PM)
doing well--getting ready for NY party with his church group

momma (Dec 30, 2008 8:29:51 PM)
not always twingle

momma (Dec 30, 2008 8:30:19 PM)
hopefully you ll have time to be prepared twingle

twinglema (Dec 30, 2008 8:30:22 PM)
mine is good except for little more falling

may (Dec 30, 2008 8:30:22 PM)
i recieved an e-mail from you anna on christmas, you have a lovely family

anna (Dec 30, 2008 8:30:43 PM)
sorry, I gotta go feed R as aide coming to shower so he will be sweet for his party

may (Dec 30, 2008 8:30:59 PM)
thats good twingle

momma (Dec 30, 2008 8:31:05 PM)
ok anna happy new yr

anna (Dec 30, 2008 8:31:23 PM)
yw May--I sent a few photos to people I don't get to chat with much

may (Dec 30, 2008 8:31:37 PM)
yes happy new year

momma (Dec 30, 2008 8:32:06 PM)
so twingle how the kitchen project comming?

anna (Dec 30, 2008 8:32:07 PM)
Ok, timer beeping, nice chatting. A better 2009 for all.

anna (Dec 30, 2008 8:32:11 PM)
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twinglema (Dec 30, 2008 8:32:57 PM)
they are starting on monday!

momma (Dec 30, 2008 8:33:09 PM)
cool

twinglema (Dec 30, 2008 8:33:14 PM)
so i am packing up the kitchen etc.

momma (Dec 30, 2008 8:33:21 PM)
fun

twinglema (Dec 30, 2008 8:33:36 PM)
so of course, hubby wants to invite someone to dinner thursday lol

momma (Dec 30, 2008 8:33:49 PM)
lol

twinglema (Dec 30, 2008 8:34:07 PM)
well speak of the devil, he just came in, so i gotta go

momma (Dec 30, 2008 8:34:27 PM)
ok good night and happy new yr

twinglema (Dec 30, 2008 8:34:31 PM)
it was really nice to see you back may, please dont be a stranger!

twinglema (Dec 30, 2008 8:34:37 PM)
anyone chatting tomorrow?

may (Dec 30, 2008 8:34:40 PM)
bye twingle

momma (Dec 30, 2008 8:34:44 PM)
not sure

twinglema (Dec 30, 2008 8:34:49 PM)
Happy new year to all!

twinglema (Dec 30, 2008 8:35:02 PM)
bye, take care, glas corey is alright now.

may (Dec 30, 2008 8:35:09 PM)
thanks,I won't

twinglema (Dec 30, 2008 8:35:10 PM)
glad

twinglema (Dec 30, 2008 8:35:17 PM)
God Bless

twinglema (Dec 30, 2008 8:35:20 PM)
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may (Dec 30, 2008 8:35:22 PM)
good night

may (Dec 30, 2008 8:35:29 PM)
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momma (Dec 30, 2008 8:35:34 PM)
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