DMD Parent Chat

liisau (Jul 1, 2008 8:58:17 PM)
(This user has entered DMD Parent Chat)

anna (Jul 1, 2008 8:58:38 PM)
Hi Liisa

liisau (Jul 1, 2008 8:58:47 PM)
hi how are you?

anna (Jul 1, 2008 8:58:56 PM)
Fine--a bit hot!

liisau (Jul 1, 2008 8:59:08 PM)
weather or personal body temp

anna (Jul 1, 2008 8:59:25 PM)
R wears warm clothes as work is too cold, then comes out and boils

anna (Jul 1, 2008 8:59:41 PM)
well, at my age I am always hot I guess

liisau (Jul 1, 2008 9:00:10 PM)
annoying for R. I'm always hot too, but all for my meds sake

anna (Jul 1, 2008 9:00:37 PM)
our friends with dmd came over to visit and go to the big party for the twins with dmd turning 50

liisau (Jul 1, 2008 9:00:56 PM)
oh wow... how much fun

liisau (Jul 1, 2008 9:01:06 PM)
also...how can there be dmd 50 year olds?

anna (Jul 1, 2008 9:01:37 PM)
yes, they are amazing

anna (Jul 1, 2008 9:02:08 PM)
R and I didn't get to go to the party as we had another one to attend instead

liisau (Jul 1, 2008 9:02:30 PM)
I don't understand though. how is it possible for them to be 50 and not be BMD?

liisau (Jul 1, 2008 9:02:56 PM)
you all are party animals

anna (Jul 1, 2008 9:03:15 PM)
they were on time for dmd markers and have been on vents for almost 20 years

anna (Jul 1, 2008 9:03:28 PM)
er, 30

anna (Jul 1, 2008 9:03:45 PM)
rod halverson

liisau (Jul 1, 2008 9:03:46 PM)
oh wow

anna (Jul 1, 2008 9:04:03 PM)
oh no, didnt mean to write his name here

anna (Jul 1, 2008 9:04:11 PM)
ignore that name!

liisau (Jul 1, 2008 9:04:19 PM)
no worries

liisau (Jul 1, 2008 9:04:44 PM)
vents for 30 years?

liisau (Jul 1, 2008 9:04:51 PM)
oh man?

anna (Jul 1, 2008 9:04:56 PM)
I know....

liisau (Jul 1, 2008 9:05:22 PM)
so pretty slow progressing for DMD

liisau (Jul 1, 2008 9:05:46 PM)
How wild

anna (Jul 1, 2008 9:05:52 PM)
no--not slow, they have just been kept alive all this time due to modern technology

anna (Jul 1, 2008 9:06:31 PM)
R is on a new state program that might turn out well

liisau (Jul 1, 2008 9:06:36 PM)
well that is strue

liisau (Jul 1, 2008 9:06:53 PM)
what's it about?

anna (Jul 1, 2008 9:06:58 PM)
he gets to totally manage his own care

liisau (Jul 1, 2008 9:07:10 PM)
interesting

anna (Jul 1, 2008 9:07:29 PM)
I will tell about it after he has been on it awhile--just started today

liisau (Jul 1, 2008 9:07:29 PM)
how was it before then?

anna (Jul 1, 2008 9:07:53 PM)
R was on DDD (dept for developmental disabilities)

anna (Jul 1, 2008 9:08:12 PM)
they sent him a letter saying he had been on it by mistake all these years

liisau (Jul 1, 2008 9:08:26 PM)
wow, how comforting

anna (Jul 1, 2008 9:08:28 PM)
and he couldn't be on it because his IQ is too high

anna (Jul 1, 2008 9:08:53 PM)
bureaucracy!

liisau (Jul 1, 2008 9:09:19 PM)
must be frustrating, but is this much better then all is good

anna (Jul 1, 2008 9:09:30 PM)
I hope so

liisau (Jul 1, 2008 9:09:35 PM)
what's the new program called?

anna (Jul 1, 2008 9:09:43 PM)
New Freedom

liisau (Jul 1, 2008 9:10:13 PM)
and how is it suppose to be better other then managing own care

anna (Jul 1, 2008 9:11:00 PM)
I will get more help and a bit more money each month--and they will let some of his hours convert to saved money for him to use

anna (Jul 1, 2008 9:11:15 PM)
we will see.....

liisau (Jul 1, 2008 9:11:46 PM)
so...they planning on a bunch of back pay at all then?

anna (Jul 1, 2008 9:12:24 PM)
no back pay

liisau (Jul 1, 2008 9:12:58 PM)
figures

liisau (Jul 1, 2008 9:13:07 PM)
I really hope this works out better

anna (Jul 1, 2008 9:13:13 PM)
but, we can only use certain agencies for help. if we find our own aide they will pay and do a criminal background check.

liisau (Jul 1, 2008 9:13:28 PM)
ok...some good there

anna (Jul 1, 2008 9:13:36 PM)
we will see

anna (Jul 1, 2008 9:13:42 PM)
how is your family?

anna (Jul 1, 2008 9:14:08 PM)
did you get the newest QUEST?

liisau (Jul 1, 2008 9:14:23 PM)
good. working, trying to have some fun. Noticing that Connor is having more difficulties with stairs

liisau (Jul 1, 2008 9:14:43 PM)
not much more but really needs two hands now. I'm sure we have but not read yet

anna (Jul 1, 2008 9:15:03 PM)
it is on line also

liisau (Jul 1, 2008 9:15:20 PM)
yuppers

liisau (Jul 1, 2008 9:15:34 PM)
read the article about how much care costs over a few years

liisau (Jul 1, 2008 9:15:53 PM)
it was crazy

liisau (Jul 1, 2008 9:15:59 PM)
did you see that?

anna (Jul 1, 2008 9:16:20 PM)
not yet--only read about the book our friend wrote so far

liisau (Jul 1, 2008 9:16:36 PM)
ah...look forward to it

anna (Jul 1, 2008 9:17:29 PM)
on page 68 they talk about the book by Aaron

liisau (Jul 1, 2008 9:18:34 PM)
ah cool, I will check that out! How's things going with the new place?

anna (Jul 1, 2008 9:18:37 PM)
the chats haven't been well attended lately

anna (Jul 1, 2008 9:18:51 PM)
I still don't have things on the walls

anna (Jul 1, 2008 9:19:19 PM)
was given a lot of art but cannot decide where to put it---cannot be decisive for some reason

anna (Jul 1, 2008 9:19:55 PM)
I seem to have a lot of Asian art/elephants/ and birds

liisau (Jul 1, 2008 9:21:46 PM)
yes, there is definitely less attendance. I was under the impression these were not being held much over the summer, but I check now and then.

anna (Jul 1, 2008 9:22:12 PM)
it is interesting to see others the same ages as our son with dmd--but you have to work hard not to "compare"

liisau (Jul 1, 2008 9:22:19 PM)
asian work eh

liisau (Jul 1, 2008 9:22:36 PM)
sounds beautiful

anna (Jul 1, 2008 9:22:56 PM)
a lovely Japanese screen----

anna (Jul 1, 2008 9:23:21 PM)
more important, we were given an alternating mattress pad for R's bed

liisau (Jul 1, 2008 9:23:42 PM)
do you mean that you saw men R's age who are doing better/worse?

anna (Jul 1, 2008 9:23:44 PM)
he really likes it now that we patched the leak

anna (Jul 1, 2008 9:24:18 PM)
yes, so you cannot compare or it will drive you crazy (a short drive for me)

liisau (Jul 1, 2008 9:24:59 PM)
short drive - that was kinda funny... considering. what kind of leak?

liisau (Jul 1, 2008 9:25:09 PM)
air or water bed

anna (Jul 1, 2008 9:25:46 PM)
air current alternate between rows of diamond=shaped pillows

liisau (Jul 1, 2008 9:25:58 PM)
oh interesting

anna (Jul 1, 2008 9:25:59 PM)
is good for guys who cannot move themselves in bed

liisau (Jul 1, 2008 9:27:02 PM)
how is R enjoying the work?

liisau (Jul 1, 2008 9:27:25 PM)
is he there with you?

anna (Jul 1, 2008 9:27:30 PM)
he has been very busy and working OT

anna (Jul 1, 2008 9:27:46 PM)
he is in and out of the room

anna (Jul 1, 2008 9:28:11 PM)
it is hard to get a definative statment about anything out of him

anna (Jul 1, 2008 9:28:27 PM)
he is so easy-going

liisau (Jul 1, 2008 9:28:34 PM)
hmmm.... well, wanna ask him a question for me?

anna (Jul 1, 2008 9:28:40 PM)
ok

liisau (Jul 1, 2008 9:29:12 PM)
why is Access 2003 not very compatible with SQL Server 2005? will there be the same issue with 2008?

anna (Jul 1, 2008 9:31:15 PM)
he says he didn't know there was an incompatibility so cannot tell you--

liisau (Jul 1, 2008 9:32:03 PM)
ok. thanks. I will be happy to share what I find if he's interested

liisau (Jul 1, 2008 9:32:50 PM)
I'm writing a SQL Server upgrade test plan and we discovered some issues with Access

momma (Jul 1, 2008 9:33:05 PM)
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liisau (Jul 1, 2008 9:33:23 PM)
hi momma

momma (Jul 1, 2008 9:33:31 PM)
lisa

liisau (Jul 1, 2008 9:33:35 PM)
I've missed you and anna

anna (Jul 1, 2008 9:33:36 PM)
he would be interested

anna (Jul 1, 2008 9:33:41 PM)
Hi Momma

momma (Jul 1, 2008 9:33:46 PM)
hello anna

anna (Jul 1, 2008 9:34:16 PM)
How is wet and wild Ohio?

momma (Jul 1, 2008 9:34:52 PM)
good it was beautiful today

momma (Jul 1, 2008 9:35:17 PM)
rain on thrus but supose to be great this weekend

liisau (Jul 1, 2008 9:35:18 PM)
brb

anna (Jul 1, 2008 9:35:52 PM)
too hot here for comfort--most of us don't have AC in our homes, but the businesses are too cold

anna (Jul 1, 2008 9:36:06 PM)
R has been cold at work

momma (Jul 1, 2008 9:36:32 PM)
yea i hate to go into resturants and groceries way too clod

momma (Jul 1, 2008 9:36:36 PM)
cold*

anna (Jul 1, 2008 9:36:59 PM)
momma, we are experimenting with turning the epap down from 4 to 2.8 to see if that helps with the morning gassyness

momma (Jul 1, 2008 9:37:11 PM)
oh really

anna (Jul 1, 2008 9:37:18 PM)
will let you know......

momma (Jul 1, 2008 9:37:20 PM)
ok

anna (Jul 1, 2008 9:37:58 PM)
just started turning it down last night--will do it gradually

momma (Jul 1, 2008 9:38:15 PM)
kent doesnt hsve gas actullay gas would be great that would mean his stomach is working

anna (Jul 1, 2008 9:38:22 PM)
then we will run it by the pulmonologist

momma (Jul 1, 2008 9:38:39 PM)
cause now his stomach is being stuborn

anna (Jul 1, 2008 9:38:48 PM)
the stomach stops working besides the loss of gut motility??

momma (Jul 1, 2008 9:39:01 PM)
excatly

momma (Jul 1, 2008 9:39:20 PM)
doc say he has almost none

anna (Jul 1, 2008 9:39:28 PM)
oh the further joys of dmd

momma (Jul 1, 2008 9:39:32 PM)
yea

momma (Jul 1, 2008 9:40:19 PM)
then was having some bowel incontannce so dr says dont give muralax wrong answer

anna (Jul 1, 2008 9:40:41 PM)
no Miralax= big problems

momma (Jul 1, 2008 9:40:50 PM)
how s the lunch aide

momma (Jul 1, 2008 9:40:56 PM)
yes!

anna (Jul 1, 2008 9:41:15 PM)
uh--called in sick and then we are on new program that won't use her agency

momma (Jul 1, 2008 9:41:29 PM)
omg

anna (Jul 1, 2008 9:41:46 PM)
so, she showed up today even tho I told her not to until she checked with her agency

anna (Jul 1, 2008 9:42:00 PM)
R sent her home

momma (Jul 1, 2008 9:42:07 PM)
mabey you could pay her?

momma (Jul 1, 2008 9:42:20 PM)
or is she not worthy

anna (Jul 1, 2008 9:42:28 PM)
we could.....but we are not that fond of her

momma (Jul 1, 2008 9:42:41 PM)
ah yea we have some like that

anna (Jul 1, 2008 9:42:44 PM)
we need someone QUIET

momma (Jul 1, 2008 9:42:48 PM)
lol

anna (Jul 1, 2008 9:43:44 PM)
now R's lunch table has disappeared from the lounge

momma (Jul 1, 2008 9:43:52 PM)
geeze

momma (Jul 1, 2008 9:44:10 PM)
whats up with that

anna (Jul 1, 2008 9:44:32 PM)
but, he is working on getting it back as a "reasonable accomidation"

momma (Jul 1, 2008 9:44:58 PM)
well anna i have to go kent got nature cal and needs a shower ill ttyl

anna (Jul 1, 2008 9:45:08 PM)
ok, ttyl

momma (Jul 1, 2008 9:45:11 PM)
night

momma (Jul 1, 2008 9:45:15 PM)
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liisau (Jul 1, 2008 9:46:57 PM)
back

anna (Jul 1, 2008 9:47:13 PM)
just when Momma had to go

anna (Jul 1, 2008 9:48:02 PM)
I still haven't made supper either

liisau (Jul 1, 2008 9:49:11 PM)
sorry about that

liisau (Jul 1, 2008 9:49:20 PM)
what's epap?

anna (Jul 1, 2008 9:49:25 PM)
R is "patrolling' lol--I think he needs a break from computing

anna (Jul 1, 2008 9:49:36 PM)
I will try to explain...

liisau (Jul 1, 2008 9:49:41 PM)
lol, ok. won't keep if you want

liisau (Jul 1, 2008 9:50:10 PM)
gut mobility loss...stomach loss.. crazy stuff

liisau (Jul 1, 2008 9:50:32 PM)
what about lower GI tract? when do you typically start noticing issues there

anna (Jul 1, 2008 9:50:43 PM)
the "bi-pap" device he uses at night has 2 settings. one for inspiration, one much lower so expiration is possible. otherwise, CO2 could build up as our guys at R's age are not so good at either breathing in or out.

anna (Jul 1, 2008 9:51:04 PM)
we don't have those issues yet and R is 5 years older than K

anna (Jul 1, 2008 9:51:49 PM)
we have recently started to use Miralex to keep things moving, but R is still able to "go" easily

liisau (Jul 1, 2008 9:52:19 PM)
ok.... why would momma's doc saying no miralex

anna (Jul 1, 2008 9:52:28 PM)
I think that is because he has been on a "routine" to go right after breakfast since he was 7 and his body is just trained to go at that time

anna (Jul 1, 2008 9:53:00 PM)
I think the doc is blaming the Miralax for the bowel incontenance

anna (Jul 1, 2008 9:53:35 PM)
K has always had gut sensitivity I think

liisau (Jul 1, 2008 9:53:36 PM)
oh

anna (Jul 1, 2008 9:53:48 PM)
so, it may not happen to C

liisau (Jul 1, 2008 9:53:56 PM)
C has always had blowout issues

liisau (Jul 1, 2008 9:54:11 PM)
normal for babies but as a preschooler....it's just over the top

liisau (Jul 1, 2008 9:54:26 PM)
it's loose and explosive

anna (Jul 1, 2008 9:54:27 PM)
but, he is so young yet so there is hope that will change

anna (Jul 1, 2008 9:54:46 PM)
gosh, it is always something...

liisau (Jul 1, 2008 9:54:59 PM)
the funky pattern of this started around 9 months and is what lead us to finding out about dmd

anna (Jul 1, 2008 9:55:04 PM)
maybe he is allergic to something he eats?

anna (Jul 1, 2008 9:55:16 PM)
I am sure you thought of that already

liisau (Jul 1, 2008 9:55:17 PM)
not sure

liisau (Jul 1, 2008 9:55:24 PM)
but so far all test negative

liisau (Jul 1, 2008 9:55:31 PM)
docs did do some tests on that

anna (Jul 1, 2008 9:55:51 PM)
maybe his GI tract is just "Immature"?

liisau (Jul 1, 2008 9:56:56 PM)
my older boy definitely has GERD issues, but not sure about C and what you are suggesting. Well, as long as they are willing to help manage it at school then no biggie eh? LOL

anna (Jul 1, 2008 9:57:47 PM)
yes, hopefully your school will be very helpful there

liisau (Jul 1, 2008 9:58:13 PM)
the director has CMT so she does totally empathize

anna (Jul 1, 2008 9:58:34 PM)
oh, that is good for C!

liisau (Jul 1, 2008 9:58:44 PM)
indeed

liisau (Jul 1, 2008 9:59:09 PM)
okay, I'm going to go. enjoy dinner and stay cool. say hi to R!

anna (Jul 1, 2008 9:59:19 PM)
ok, U2 ttyl.

liisau (Jul 1, 2008 9:59:30 PM)
nite!

liisau (Jul 1, 2008 9:59:32 PM)
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anna (Jul 1, 2008 9:59:37 PM)
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