DMD Parent Chat

momma (Jun 17, 2008 9:09:44 PM)
(This user has entered DMD Parent Chat)

anna (Jun 17, 2008 9:10:00 PM)
Hi D

momma (Jun 17, 2008 9:10:11 PM)
hello

anna (Jun 17, 2008 9:10:21 PM)
what's new?

momma (Jun 17, 2008 9:10:39 PM)
same ole

anna (Jun 17, 2008 9:10:46 PM)
R got a new lunch aide today

momma (Jun 17, 2008 9:10:53 PM)
yeah!!!

anna (Jun 17, 2008 9:11:12 PM)
I predict she will not last long...got to get an office pool going lol

momma (Jun 17, 2008 9:11:28 PM)
i had a bit of a panic this afternoon

anna (Jun 17, 2008 9:11:34 PM)
oh no?

momma (Jun 17, 2008 9:12:05 PM)
kent transpot was 30 min late i know 30 min isnt log but....

anna (Jun 17, 2008 9:12:15 PM)
was he waiting outside?

momma (Jun 17, 2008 9:12:30 PM)
all these thoughts were running threw my head

anna (Jun 17, 2008 9:12:46 PM)
oh, ic--you were waiting for him

anna (Jun 17, 2008 9:12:59 PM)
yes, the imagination can do us in

momma (Jun 17, 2008 9:13:26 PM)
no his driver had a meetings at 2 and that the time he was done so he waited 30 min but i giess i would of call to tell me

momma (Jun 17, 2008 9:13:39 PM)
oh well all is well so anyway

anna (Jun 17, 2008 9:14:03 PM)
we are mothers--born to worry

momma (Jun 17, 2008 9:14:12 PM)
yea so true

momma (Jun 17, 2008 9:14:29 PM)
i guess thier meeting was in part do to kent

anna (Jun 17, 2008 9:14:52 PM)
then he should have been invited to attend?

momma (Jun 17, 2008 9:15:45 PM)
when we transport him his arms fall off his tray so i use this big elastic band it very loose but none the less they say they cant put it on him

anna (Jun 17, 2008 9:16:31 PM)
no, it is illegal to put it on him without dr signing form every 24 hours

momma (Jun 17, 2008 9:16:46 PM)
omg i dont have time for this

momma (Jun 17, 2008 9:17:05 PM)
i guess they could get a bus aide to pick his arms up

anna (Jun 17, 2008 9:17:05 PM)
need to have a solution fast

momma (Jun 17, 2008 9:17:29 PM)
and i doubt that will happen

anna (Jun 17, 2008 9:17:33 PM)
how about placing them on a very soft pillow that his arms sink into and strap pillow to tray?

momma (Jun 17, 2008 9:17:56 PM)
good thought

momma (Jun 17, 2008 9:18:15 PM)
ill have to talk to them tommrow to see whats exceptable

anna (Jun 17, 2008 9:18:22 PM)
those "beany" pillow are good

momma (Jun 17, 2008 9:18:27 PM)
yea

anna (Jun 17, 2008 9:19:06 PM)
Roy has one--it is called a "moshi"

momma (Jun 17, 2008 9:19:15 PM)
oh really

anna (Jun 17, 2008 9:19:46 PM)
got it at Target or WalMart I think--but I see them everywhere

momma (Jun 17, 2008 9:19:59 PM)
so new luch aide doesnt look promising?

momma (Jun 17, 2008 9:20:14 PM)
ill have to look

anna (Jun 17, 2008 9:20:15 PM)
anyway, if his arms were trapped in one maybe they would stay put

rayla (Jun 17, 2008 9:20:18 PM)
(This user has entered DMD Parent Chat)

anna (Jun 17, 2008 9:20:27 PM)
Hi Rayla!

momma (Jun 17, 2008 9:20:31 PM)
yea might work

momma (Jun 17, 2008 9:20:35 PM)
hi rayla

rayla (Jun 17, 2008 9:20:51 PM)
Hi, ladies

momma (Jun 17, 2008 9:20:57 PM)
how are ya

anna (Jun 17, 2008 9:21:04 PM)
what is the news from your end Rayla?

anna (Jun 17, 2008 9:22:57 PM)
?

anna (Jun 17, 2008 9:23:38 PM)
anyway, I can usually predict if an aide will stay and I bet this one won't last a month

rayla (Jun 17, 2008 9:24:25 PM)
(This user has left DigiChat)

momma (Jun 17, 2008 9:24:28 PM)
yea we had a nurse leave said she see kent friday gaot word she quit sat

anna (Jun 17, 2008 9:24:30 PM)
she comes from the town we just moved away from and has to go 14 miles each way to R's work

anna (Jun 17, 2008 9:24:52 PM)
darn, we hadn't gotten to talk to Rayla for awhile

momma (Jun 17, 2008 9:25:03 PM)
yea

anna (Jun 17, 2008 9:25:06 PM)
er, we haven't talked to

anna (Jun 17, 2008 9:25:21 PM)
ain't no gotten

rayla (Jun 17, 2008 9:25:54 PM)
(This user has entered DMD Parent Chat)

momma (Jun 17, 2008 9:26:06 PM)
well hello stranger lol

anna (Jun 17, 2008 9:26:06 PM)
please stay awhile Rayla!

anna (Jun 17, 2008 9:26:13 PM)
got the boot?

rayla (Jun 17, 2008 9:26:24 PM)
got booted

anna (Jun 17, 2008 9:26:54 PM)
we all get the boot from time to time without explanation

anna (Jun 17, 2008 9:27:17 PM)
if your Java isn't updated that might be the reason

anna (Jun 17, 2008 9:28:17 PM)
anyway, how is your son doing?

rayla (Jun 17, 2008 9:29:58 PM)
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anna (Jun 17, 2008 9:30:02 PM)
!

momma (Jun 17, 2008 9:30:08 PM)
hmm

anna (Jun 17, 2008 9:31:16 PM)
we could all write funny short stories about aides that have come and gone all too soon

momma (Jun 17, 2008 9:31:29 PM)
lol

momma (Jun 17, 2008 9:31:43 PM)
probably be a best seller

anna (Jun 17, 2008 9:31:55 PM)
one of ours said "cu tomorrow" and the next time I saw her was at the hospital as an RN!!

momma (Jun 17, 2008 9:32:29 PM)
this one is going to work in factory?

momma (Jun 17, 2008 9:32:51 PM)
she my daughters age and has had 17 jobs

anna (Jun 17, 2008 9:32:56 PM)
mattress factory?

momma (Jun 17, 2008 9:33:00 PM)
lol

momma (Jun 17, 2008 9:33:07 PM)
could be

anna (Jun 17, 2008 9:33:15 PM)
she could test them

momma (Jun 17, 2008 9:33:22 PM)
lol yea

anna (Jun 17, 2008 9:33:55 PM)
most people don't work all their lives at one place like they used to I guess

anna (Jun 17, 2008 9:34:15 PM)
the longest my hubby has worked anywhere is 8 years

momma (Jun 17, 2008 9:34:21 PM)
yea but she been a nurse 3 or 4 yrs

anna (Jun 17, 2008 9:34:51 PM)
career witch--K was the last straw lol

anna (Jun 17, 2008 9:34:57 PM)
switch

anna (Jun 17, 2008 9:35:04 PM)
maybe witch lol

momma (Jun 17, 2008 9:35:45 PM)
kent easy to care for i help get him up all she did was feed do vitals give him 1 pill

momma (Jun 17, 2008 9:36:13 PM)
oh well people do what they gottta do

anna (Jun 17, 2008 9:36:19 PM)
we are nice to work for too

anna (Jun 17, 2008 9:36:48 PM)
I think our longest lasting aide was 3 months--but most it is much less

momma (Jun 17, 2008 9:37:08 PM)
we have had a bit better luck than that

momma (Jun 17, 2008 9:37:24 PM)
she was here 7 monthes

anna (Jun 17, 2008 9:37:37 PM)
well, I really want a bath aide--I have to bathe R myself tonight

momma (Jun 17, 2008 9:38:11 PM)
we never have that hubby helps so not to bad

momma (Jun 17, 2008 9:38:44 PM)
but it would be nice to have outside help once in a while

anna (Jun 17, 2008 9:39:03 PM)
yes it is

anna (Jun 17, 2008 9:39:21 PM)
but it takes time to build up the trust--and then they leave

momma (Jun 17, 2008 9:39:42 PM)
but i figure if i keep nurses duty to a minium its easier for them

momma (Jun 17, 2008 9:40:14 PM)
but sometime that back fires then they do nothing

anna (Jun 17, 2008 9:40:18 PM)
I write down exactly what they should do and post it by R's bed

momma (Jun 17, 2008 9:41:23 PM)
i left a note on clip board but some pay any attenion to it

anna (Jun 17, 2008 9:42:48 PM)
yes, it is hard to communicate with some

momma (Jun 17, 2008 9:43:32 PM)
yea

anna (Jun 17, 2008 9:44:02 PM)
well, I am going to go feed R and get him bathed. we go to bed early around here.

momma (Jun 17, 2008 9:44:05 PM)
well anna gonna start getting kent bed time stuff around

john.e.bee (Jun 17, 2008 9:44:17 PM)
(This user has entered DMD Parent Chat)

anna (Jun 17, 2008 9:44:34 PM)
Hi John--you just caught me

john.e.bee (Jun 17, 2008 9:44:43 PM)
Hi Anna

momma (Jun 17, 2008 9:44:53 PM)
(This user has left DigiChat)

anna (Jun 17, 2008 9:45:15 PM)
are you a dmd parent?

john.e.bee (Jun 17, 2008 9:45:27 PM)
yes :(

john.e.bee (Jun 17, 2008 9:45:39 PM)
just recently diagnosed

anna (Jun 17, 2008 9:45:46 PM)
me too. my son is 27

anna (Jun 17, 2008 9:45:58 PM)
so sorry to hear

john.e.bee (Jun 17, 2008 9:46:18 PM)
yeah, it's been tough. he is 6 now

anna (Jun 17, 2008 9:46:24 PM)
and we are real short of chatters tonight--but how can I help you? any questions?

anna (Jun 17, 2008 9:46:34 PM)
it is AWFUL!!!!!

anna (Jun 17, 2008 9:46:59 PM)
but, we HAVE to learn to deal as our kids get their cues on how to act/respond from us

john.e.bee (Jun 17, 2008 9:47:18 PM)
just checking things out. im sure I'll be coming back here to chat often.

john.e.bee (Jun 17, 2008 9:47:24 PM)
yes

anna (Jun 17, 2008 9:47:36 PM)
my son is 27 and works full-time

john.e.bee (Jun 17, 2008 9:47:54 PM)
wow! that is awesome

anna (Jun 17, 2008 9:48:08 PM)
yes--our guys are doing so much better these days

john.e.bee (Jun 17, 2008 9:48:22 PM)
im also a widower so i am doing this solo : /

anna (Jun 17, 2008 9:48:51 PM)
and with modern technology they can always use the computer. yes, I am alone here with my son.

anna (Jun 17, 2008 9:49:06 PM)
it can be done!

john.e.bee (Jun 17, 2008 9:49:21 PM)
yeah, liam loves the computer :)

anna (Jun 17, 2008 9:49:35 PM)
I went to a university with my son and now have moved with him so he could work at ms

john.e.bee (Jun 17, 2008 9:49:38 PM)
im a software engineer so i started him early

anna (Jun 17, 2008 9:49:50 PM)
so is my son

john.e.bee (Jun 17, 2008 9:49:55 PM)
microsoft?

anna (Jun 17, 2008 9:49:58 PM)
yes

john.e.bee (Jun 17, 2008 9:50:06 PM)
very cool. i work for Oracle

anna (Jun 17, 2008 9:50:15 PM)
also cool

anna (Jun 17, 2008 9:50:36 PM)
my son uses HeadMouse and on-screen keyboard

john.e.bee (Jun 17, 2008 9:50:49 PM)
also have a 3 year old son.. CK test was normal so neurologist said not to worry

anna (Jun 17, 2008 9:50:56 PM)
yay!

john.e.bee (Jun 17, 2008 9:51:52 PM)
yeah, double wammy would have been too much.. actually triple wammy with mommy's death :( i think she may have been a carrier

anna (Jun 17, 2008 9:52:15 PM)
so sorry to hear!

anna (Jun 17, 2008 9:52:26 PM)
my friend had 3 w/dmd

john.e.bee (Jun 17, 2008 9:52:35 PM)
manifesting carrier... she always had leg and feet problems.. fatigue and stuff

john.e.bee (Jun 17, 2008 9:52:57 PM)
oh, im sorry to hear that. that is a test of strength for sure

anna (Jun 17, 2008 9:53:15 PM)
yes, some carriers do. I am also a carrier as is my daughter--but it started with me.

anna (Jun 17, 2008 9:53:22 PM)
so, we didn't know

john.e.bee (Jun 17, 2008 9:53:48 PM)
i should really have her mom get tested. she was adopted so she has no record of disease

anna (Jun 17, 2008 9:54:26 PM)
we had our extended family tested and I was the first carrier

john.e.bee (Jun 17, 2008 9:54:52 PM)
strange how it just spontaneously happens

john.e.bee (Jun 17, 2008 9:55:28 PM)
when was your son diagnosed?

anna (Jun 17, 2008 9:55:36 PM)
yes--but now we just have to deal with it

anna (Jun 17, 2008 9:55:48 PM)
my son was 7--very late

john.e.bee (Jun 17, 2008 9:56:10 PM)
was he already wearing AFO's?

anna (Jun 17, 2008 9:56:14 PM)
lived in small town and dr didn't recognize it

anna (Jun 17, 2008 9:56:28 PM)
no AFO's until he stopped walking at 9

john.e.bee (Jun 17, 2008 9:57:23 PM)
liam has had braces for 2 years now and the foot doctor finally referred him to a neurologist before serial casting him.

anna (Jun 17, 2008 9:57:44 PM)
well, drs differ on serial casting....

john.e.bee (Jun 17, 2008 9:57:57 PM)
found out serial casting wasnt necessary once we got the CK results

anna (Jun 17, 2008 9:58:03 PM)
we didn't do that but son had tendon transfer to release ankle

john.e.bee (Jun 17, 2008 9:58:29 PM)
Did you start him on steroids at 7?

anna (Jun 17, 2008 9:58:37 PM)
my son still wears AFO's so he can wear regular shoes

anna (Jun 17, 2008 9:58:54 PM)
no, steroids were not popular 20 years ago

john.e.bee (Jun 17, 2008 9:59:31 PM)
ok. so it was never considered an option for him?

anna (Jun 17, 2008 9:59:54 PM)
no

anna (Jun 17, 2008 10:00:16 PM)
but, he has done very well for himself

anna (Jun 17, 2008 10:00:50 PM)
there are some parents whose sons use steroids on Thursday night chat usually

john.e.bee (Jun 17, 2008 10:01:08 PM)
I am resisting doing it for liam. because of the small window of time before the side effects outweight the benefits

anna (Jun 17, 2008 10:01:13 PM)
there are 50 year old twins in WA that have dmd and didn't use steroids

john.e.bee (Jun 17, 2008 10:01:21 PM)
such a tough call

anna (Jun 17, 2008 10:01:36 PM)
Deflazacort seems popular, but you cannot get it in US

john.e.bee (Jun 17, 2008 10:01:42 PM)
50!?

anna (Jun 17, 2008 10:01:46 PM)
yes

john.e.bee (Jun 17, 2008 10:02:06 PM)
study those two! ;)

anna (Jun 17, 2008 10:02:21 PM)
they should

john.e.bee (Jun 17, 2008 10:02:40 PM)
So I recently got the DNA results back

anna (Jun 17, 2008 10:02:43 PM)
they are on vents of course. my son uses a non-invasive vent

anna (Jun 17, 2008 10:03:11 PM)
yes, and did someone try to explain them to you?

anna (Jun 17, 2008 10:03:55 PM)
but now a known carrier can have "normal" children thru IVF and cell selection

anna (Jun 17, 2008 10:04:20 PM)
all I knew was it was my "fault"

john.e.bee (Jun 17, 2008 10:04:21 PM)
looks like he has a single point mutation...all I can do is pray that is a nonsense stop codon mutation... then he may be eligible for the new drug out there

anna (Jun 17, 2008 10:04:51 PM)
yes, that study may help many

john.e.bee (Jun 17, 2008 10:04:59 PM)
oh, that is great for your daughter then!

anna (Jun 17, 2008 10:05:27 PM)
yes, she had planned to do just that and then got pregnant before she and husband were ready

anna (Jun 17, 2008 10:05:50 PM)
had a girl--we don't know if she is a carrier yet. 50/50 chance not to be

john.e.bee (Jun 17, 2008 10:05:50 PM)
of course, with my luck it'll be a missense mutation in liam.

anna (Jun 17, 2008 10:06:29 PM)
well, with one son unaffected you are VERY lucky now

john.e.bee (Jun 17, 2008 10:06:40 PM)
eek...well, im not a super religious guy but my thoughts will be with her little one

anna (Jun 17, 2008 10:07:09 PM)
do you have a good MDA clinic there?

anna (Jun 17, 2008 10:07:15 PM)
ty

john.e.bee (Jun 17, 2008 10:07:20 PM)
neurologist was supposed to call me today but he didnt :( grrr

anna (Jun 17, 2008 10:08:03 PM)
well, at least your little guy won't have to have a muscle biopsy like they used to do routinely

anna (Jun 17, 2008 10:08:18 PM)
not needed with better genetic tests

john.e.bee (Jun 17, 2008 10:08:23 PM)
actually, I havent talked to the clinic yet. i was waiting for the dna results (procrastinating)

anna (Jun 17, 2008 10:08:37 PM)
it is ok to procrastinate

anna (Jun 17, 2008 10:08:52 PM)
lets you build your strength for what is to come

john.e.bee (Jun 17, 2008 10:09:07 PM)
now i have no excuse. it has stirred up stuff again that i am so good at ignoring it seems

anna (Jun 17, 2008 10:09:16 PM)
even a little denial buys you time to cope

john.e.bee (Jun 17, 2008 10:09:24 PM)
indeed

anna (Jun 17, 2008 10:10:08 PM)
but, parents gather their strength for the battles ahead as needed. one day at a time is enough.

john.e.bee (Jun 17, 2008 10:10:10 PM)
i am in east bay, ca so we have some good clinics in san francisco i believe

anna (Jun 17, 2008 10:10:40 PM)
good. we are more interested in pulmonary docs at this stage of the game.

john.e.bee (Jun 17, 2008 10:10:42 PM)
yep, one day at a time

john.e.bee (Jun 17, 2008 10:11:06 PM)
is he seeing one regularly now?

anna (Jun 17, 2008 10:11:20 PM)
yes, since he needs help breathing

john.e.bee (Jun 17, 2008 10:11:51 PM)
so he has an external mask or something? all the time or at night only?

anna (Jun 17, 2008 10:11:55 PM)
uses a bi-pap during sleep and a lap-top vent on back of wc during day with oral interface(no trach)

anna (Jun 17, 2008 10:13:05 PM)
here is a link featuring my son's doc: http://www.researchchannel.org/prog/displayevent.aspx?rID=4123&fID=853

john.e.bee (Jun 17, 2008 10:13:06 PM)
can he communicate verbally?

anna (Jun 17, 2008 10:13:21 PM)
of course! try and shut him up!

anna (Jun 17, 2008 10:13:25 PM)
lol

john.e.bee (Jun 17, 2008 10:13:26 PM)
haha!

anna (Jun 17, 2008 10:14:20 PM)
although I often don't understand what he means when he talks software speak

john.e.bee (Jun 17, 2008 10:14:21 PM)
sorry, im clueless beyond the not walking thing...been avoiding thinking about it. im very good at ignoring things... which can be bad

anna (Jun 17, 2008 10:14:47 PM)
well, don't even worry about the breathing issues for another 10 years

anna (Jun 17, 2008 10:14:56 PM)
maybe 8

anna (Jun 17, 2008 10:15:11 PM)
you have enough to deal with now

john.e.bee (Jun 17, 2008 10:15:23 PM)
i agree ;)

john.e.bee (Jun 17, 2008 10:15:32 PM)
i need a wife.. lol

anna (Jun 17, 2008 10:15:55 PM)
maybe you shouldn't see that video if you think you don't want to deal--but it is a very positive piece

john.e.bee (Jun 17, 2008 10:15:56 PM)
so hard to get out there to find one...hehe

anna (Jun 17, 2008 10:16:15 PM)
when would you have the time? I bet you are a great dad

john.e.bee (Jun 17, 2008 10:16:16 PM)
ill check it out. thanks

anna (Jun 17, 2008 10:16:36 PM)
the chat will suddenly close any moment

john.e.bee (Jun 17, 2008 10:16:37 PM)
meh. i could be MUCH better

john.e.bee (Jun 17, 2008 10:16:44 PM)
but much worse too

anna (Jun 17, 2008 10:16:54 PM)
give yourself credit!

john.e.bee (Jun 17, 2008 10:17:16 PM)
i thought it went until 8pm pacific

anna (Jun 17, 2008 10:17:23 PM)
there are more chats Weds. and Thursday nights

anna (Jun 17, 2008 10:17:37 PM)
oh--maybe this is the 2 hour one then

anna (Jun 17, 2008 10:17:57 PM)
yes, so it is

john.e.bee (Jun 17, 2008 10:17:59 PM)
oh, nevermind.. i cant read apparently

anna (Jun 17, 2008 10:18:20 PM)
you are right

anna (Jun 17, 2008 10:18:26 PM)
9-10 EASTERN

anna (Jun 17, 2008 10:18:45 PM)
the 2 hour one is Thursday and is better attended

john.e.bee (Jun 17, 2008 10:18:46 PM)
6-7 my time.. and it is 720.. i think you are right

anna (Jun 17, 2008 10:19:17 PM)
well, I do have to go bathe my son since the aide quit, but am so glad to meet you.

john.e.bee (Jun 17, 2008 10:19:31 PM)
ill be back on thursday if i can.. it was great meeting you anna!

anna (Jun 17, 2008 10:19:35 PM)
but sorry you join our exclusive club of bewildered parents

anna (Jun 17, 2008 10:19:56 PM)
ok, ttyl John. goodnight

john.e.bee (Jun 17, 2008 10:19:56 PM)
hehe...we'll get thru this together

john.e.bee (Jun 17, 2008 10:20:00 PM)
nitte

anna (Jun 17, 2008 10:20:09 PM)
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john.e.bee (Jun 17, 2008 10:20:21 PM)
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