DMD Parent Chat

paper (Feb 4, 2010 8:29:35 PM)
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paper (Feb 4, 2010 8:30:00 PM)
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twinglema (Feb 4, 2010 8:30:19 PM)
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twinglema (Feb 4, 2010 8:30:23 PM)
hi paper

twinglema (Feb 4, 2010 8:30:34 PM)
sorry i am so late, had a nightmare ride home

paper (Feb 4, 2010 8:30:41 PM)
hi thats ok

paper (Feb 4, 2010 8:30:58 PM)
u going to get snow

twinglema (Feb 4, 2010 8:31:17 PM)
we are getting it and they didn't alt so the streets are a mess

twinglema (Feb 4, 2010 8:31:22 PM)
salt

paper (Feb 4, 2010 8:31:29 PM)
ewww

paper (Feb 4, 2010 8:31:33 PM)
thats not good

twinglema (Feb 4, 2010 8:31:48 PM)
i have never had this much trouble driving-still shaking lol

paper (Feb 4, 2010 8:31:50 PM)
they are calling for 4 to 10 inches here starting tonight

twinglema (Feb 4, 2010 8:32:02 PM)
1-3 tonight but more tomorrow

paper (Feb 4, 2010 8:32:14 PM)
winter sucks lol

twinglema (Feb 4, 2010 8:32:25 PM)
maybe if i put on my swimsuit and go sunbathe the weather will change

twinglema (Feb 4, 2010 8:32:34 PM)
any1 else been on?

paper (Feb 4, 2010 8:32:36 PM)
you said the other night that you are a manifesting carrier right

paper (Feb 4, 2010 8:32:38 PM)
no\

twinglema (Feb 4, 2010 8:32:40 PM)
yes

twinglema (Feb 4, 2010 8:32:55 PM)
thought i was so late i missed everyone

paper (Feb 4, 2010 8:32:57 PM)
they told us tuesday that L is one too

twinglema (Feb 4, 2010 8:33:09 PM)
of duchennes?

paper (Feb 4, 2010 8:33:12 PM)
no ccd

twinglema (Feb 4, 2010 8:33:23 PM)
ccd is?

paper (Feb 4, 2010 8:33:32 PM)
central core diease

twinglema (Feb 4, 2010 8:33:34 PM)
that stinks, sorry

paper (Feb 4, 2010 8:33:35 PM)
what i have

paper (Feb 4, 2010 8:33:54 PM)
welli guess it better than being like me

twinglema (Feb 4, 2010 8:33:54 PM)
is ccd under the md family

paper (Feb 4, 2010 8:33:58 PM)
ya

paper (Feb 4, 2010 8:34:03 PM)
myopathy

paper (Feb 4, 2010 8:34:13 PM)
rare very freaking rare

twinglema (Feb 4, 2010 8:34:26 PM)
my symptoms are very similar to fibromyalgia

paper (Feb 4, 2010 8:34:59 PM)
let me get this straight a manafesting carrier can have symptoms but they are not full blown right

twinglema (Feb 4, 2010 8:35:08 PM)
yes

paper (Feb 4, 2010 8:35:37 PM)
well i guess as long as he dont ever get bad like me then he is better off

twinglema (Feb 4, 2010 8:35:39 PM)
dmd carriers need to keep an eye on their hearts

twinglema (Feb 4, 2010 8:35:44 PM)
true

paper (Feb 4, 2010 8:36:04 PM)
unlike kat she has it

twinglema (Feb 4, 2010 8:36:19 PM)
so your core muscles get weak?

twinglema (Feb 4, 2010 8:36:36 PM)
how old are your kids/

twinglema (Feb 4, 2010 8:36:39 PM)
?

paper (Feb 4, 2010 8:36:40 PM)
the core of my muscle cells are holes

paper (Feb 4, 2010 8:36:45 PM)
15 13

twinglema (Feb 4, 2010 8:36:47 PM)
really?

paper (Feb 4, 2010 8:36:50 PM)
yep

twinglema (Feb 4, 2010 8:37:04 PM)
sorry i have a lab nudging my arm making typing tough

paper (Feb 4, 2010 8:37:28 PM)
and say a normal person has 1 muscle cell and say 2 stem cells that can become muscle cells

paper (Feb 4, 2010 8:37:34 PM)
lol

twinglema (Feb 4, 2010 8:37:35 PM)
in dmd when muscle cells break down they cannot repair

twinglema (Feb 4, 2010 8:37:59 PM)
so they fill up with fat and calcium

paper (Feb 4, 2010 8:38:26 PM)
when that first muscle cell dies from work or what ever then one of the stem cells step up and become a muscle cell then you only have one back up

twinglema (Feb 4, 2010 8:38:43 PM)
and when you use the backup you are out of luck

paper (Feb 4, 2010 8:38:50 PM)
you got it

twinglema (Feb 4, 2010 8:39:13 PM)
and unfortunately like dmd everything is a muscle

paper (Feb 4, 2010 8:39:22 PM)
our bodys only have a limited # of stem cells and when they are all used thats freaking it

twinglema (Feb 4, 2010 8:39:25 PM)
so what is prognosis if you want to tell me

paper (Feb 4, 2010 8:39:27 PM)
yep

paper (Feb 4, 2010 8:39:34 PM)
w/c

paper (Feb 4, 2010 8:39:41 PM)
it wont kill me

twinglema (Feb 4, 2010 8:39:52 PM)
it doesnt affect heart muscle?

paper (Feb 4, 2010 8:39:55 PM)
but it is sure a real pisser

paper (Feb 4, 2010 8:40:02 PM)
not yet it hasnt

twinglema (Feb 4, 2010 8:40:02 PM)
well dmd does kill

twinglema (Feb 4, 2010 8:40:30 PM)
generally in mid to late 20s but sometimes earlier

paper (Feb 4, 2010 8:40:40 PM)
my lung intake is down the breath in but they said it was cause i have been on cpap so long

twinglema (Feb 4, 2010 8:40:57 PM)
do they suggest bi pap?

twinglema (Feb 4, 2010 8:41:20 PM)
it does not continuously push in air so you can exhale easier

paper (Feb 4, 2010 8:41:22 PM)
not untill o2 levels go down and stay down

paper (Feb 4, 2010 8:41:42 PM)
i am ok on the out just not the in

twinglema (Feb 4, 2010 8:41:51 PM)
be careful cuz if co2 levels get too high it tells your body to stop breathing

paper (Feb 4, 2010 8:42:05 PM)
yep

twinglema (Feb 4, 2010 8:42:07 PM)
can they set it higher?

paper (Feb 4, 2010 8:42:13 PM)
ya

paper (Feb 4, 2010 8:42:26 PM)
they just stepped it up a couple months ago

twinglema (Feb 4, 2010 8:42:42 PM)
did that help

paper (Feb 4, 2010 8:43:00 PM)
ya some i still think it needs more presure

paper (Feb 4, 2010 8:43:25 PM)
but i can only have an eval for it every 2 years

paper (Feb 4, 2010 8:44:10 PM)
i went for a pt eval today and i was a 47 out of 100 or something like that and a 47 is a fall risk i was like no sh**

paper (Feb 4, 2010 8:44:26 PM)
lol

paper (Feb 4, 2010 8:44:39 PM)
those evals are so dumb

paper (Feb 4, 2010 8:45:04 PM)
like you dont know what they end up telling u when at least 1 time a month u eat carpet

twinglema (Feb 4, 2010 8:45:30 PM)
47 out of 100 for what?

paper (Feb 4, 2010 8:45:37 PM)
for falling

paper (Feb 4, 2010 8:45:49 PM)
it is only a # thats what i think

paper (Feb 4, 2010 8:46:05 PM)
they had me so tired and hurting i started my spasms

paper (Feb 4, 2010 8:46:15 PM)
talk about embarasing

twinglema (Feb 4, 2010 8:46:30 PM)
you shouldn't be embarrassed

paper (Feb 4, 2010 8:47:05 PM)
well i do when there is a whole bunch of people i dont know staring at me and freaking out cause they dont know how to help

twinglema (Feb 4, 2010 8:47:42 PM)
they should know enought o not freak out, shame on them

paper (Feb 4, 2010 8:48:24 PM)
and i had a fasciculations in my hands they never seen that befor eather

twinglema (Feb 4, 2010 8:48:52 PM)
wow

paper (Feb 4, 2010 8:49:07 PM)
i was pissed when i left ill never go bk

twinglema (Feb 4, 2010 8:49:22 PM)
do you need to see them?

paper (Feb 4, 2010 8:49:56 PM)
even if i do i am not going to drive the 45 min to go see a bunch of people who dont know crap about md

twinglema (Feb 4, 2010 8:50:25 PM)
you dont go to an md clinic?

paper (Feb 4, 2010 8:50:26 PM)
and that is the only therapy place with in 4 countys

paper (Feb 4, 2010 8:50:39 PM)
ya in indy 3 times a year

paper (Feb 4, 2010 8:50:58 PM)
the md dr dont know about my type of md eather

paper (Feb 4, 2010 8:51:11 PM)
it is just to freaking rare they dont know what to do for me

twinglema (Feb 4, 2010 8:51:12 PM)
if it is rare that is prob why

paper (Feb 4, 2010 8:52:00 PM)
my md told me the first time she saw me that she would have to do some research about ccd before she knew what to do for me

paper (Feb 4, 2010 8:52:21 PM)
and everything she has read said it shouldnt be like what i say

paper (Feb 4, 2010 8:52:32 PM)
the research on ccd sucks

twinglema (Feb 4, 2010 8:52:34 PM)
sorry

paper (Feb 4, 2010 8:53:01 PM)
and only 2 people in the whole world is doing anything about it and all they are doing is making it happen in rats

paper (Feb 4, 2010 8:53:18 PM)
it is ok i am sorry i am bitching

twinglema (Feb 4, 2010 8:53:25 PM)
no prob

twinglema (Feb 4, 2010 8:53:30 PM)
we all do sometimes

paper (Feb 4, 2010 8:53:52 PM)
anyway every time i go to an apt i get pissed and i whine lol

twinglema (Feb 4, 2010 8:54:11 PM)
i do not like our md neuro but i really like pt and ot

twinglema (Feb 4, 2010 8:54:17 PM)
thats the only reason i go

paper (Feb 4, 2010 8:54:37 PM)
it is good to know what is wrong with me but not so good to know that they dont know what to do

paper (Feb 4, 2010 8:54:40 PM)
lol

paper (Feb 4, 2010 8:55:15 PM)
didnt u say in chat one time that your hubby is in a w/c

paper (Feb 4, 2010 8:55:23 PM)
does he have md also

twinglema (Feb 4, 2010 8:56:12 PM)
no he had a spinal cord injury when he was 14

paper (Feb 4, 2010 8:56:28 PM)
oh ok is he a para or a quad

twinglema (Feb 4, 2010 8:56:55 PM)
quad but high functioning

paper (Feb 4, 2010 8:57:17 PM)
my old boss was a c5 quad but low func

twinglema (Feb 4, 2010 8:57:34 PM)
he is c 56-incomplete break

twinglema (Feb 4, 2010 8:57:54 PM)
he is outside palying with the dog in the snow right now

paper (Feb 4, 2010 8:58:02 PM)
oh ok well i know all about what that is like to deal with

twinglema (Feb 4, 2010 8:58:03 PM)
c5-6 not 56 lol

paper (Feb 4, 2010 8:58:08 PM)
lol

twinglema (Feb 4, 2010 8:58:25 PM)
he really only needs help getting out of bed and with shoes/socks

paper (Feb 4, 2010 8:58:27 PM)
our does love the snow harley our poodle rolls in it

twinglema (Feb 4, 2010 8:58:33 PM)
he is an attorney

paper (Feb 4, 2010 8:58:38 PM)
cool

paper (Feb 4, 2010 8:58:55 PM)
do u do all his care

twinglema (Feb 4, 2010 8:59:01 PM)
yep

paper (Feb 4, 2010 8:59:07 PM)
bc

twinglema (Feb 4, 2010 8:59:11 PM)
he takes care of me too ;)

paper (Feb 4, 2010 8:59:16 PM)
and all that

paper (Feb 4, 2010 9:00:01 PM)
kat has to have bowel care done 2 times a week cause the md has affected her intestins

twinglema (Feb 4, 2010 9:00:13 PM)
he can do that himslef

paper (Feb 4, 2010 9:00:28 PM)
really wow thats great

twinglema (Feb 4, 2010 9:00:39 PM)
he has a shower chair

twinglema (Feb 4, 2010 9:00:48 PM)
luke is gonna need more care eventually

twinglema (Feb 4, 2010 9:01:11 PM)
than my hubby

paper (Feb 4, 2010 9:01:25 PM)
ya thats how it happens

paper (Feb 4, 2010 9:02:07 PM)
we are going to have to get a new house eventually this one is to hard for me to get around in

twinglema (Feb 4, 2010 9:03:13 PM)
yeah, in that way we are lucky cuz our house is already accessible

twinglema (Feb 4, 2010 9:03:21 PM)
we know lots of peole who have moved

paper (Feb 4, 2010 9:03:44 PM)
the bathroom i use is so small i cant even get my walker in there

paper (Feb 4, 2010 9:04:02 PM)
the door way is only 28 inches wide

paper (Feb 4, 2010 9:04:17 PM)
and our bedroom is upstairs

twinglema (Feb 4, 2010 9:04:33 PM)
yeah they need to be 32-36

twinglema (Feb 4, 2010 9:04:40 PM)
we widened several doors here

twinglema (Feb 4, 2010 9:05:13 PM)
it is not too expensive to do

paper (Feb 4, 2010 9:05:14 PM)
this house is over 100 years old county wont let us do renavations

twinglema (Feb 4, 2010 9:05:26 PM)
and you may be able to find an agency to help

paper (Feb 4, 2010 9:05:39 PM)
we can even change the color with out permission

paper (Feb 4, 2010 9:05:48 PM)
cant even

momma (Feb 4, 2010 9:05:55 PM)
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paper (Feb 4, 2010 9:05:59 PM)
hi momma

twinglema (Feb 4, 2010 9:06:03 PM)
why is it histroic?

twinglema (Feb 4, 2010 9:06:06 PM)
hi momma

momma (Feb 4, 2010 9:06:09 PM)
hi

twinglema (Feb 4, 2010 9:06:11 PM)
hisoric

twinglema (Feb 4, 2010 9:06:21 PM)
historic 3rd times a charm

momma (Feb 4, 2010 9:06:28 PM)
brb getting kent in shower and ill be back

paper (Feb 4, 2010 9:06:32 PM)
ya kind of it was the second house to be built here when town was being made

twinglema (Feb 4, 2010 9:06:33 PM)
ok

paper (Feb 4, 2010 9:06:36 PM)
k

liisau (Feb 4, 2010 9:06:54 PM)
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twinglema (Feb 4, 2010 9:06:57 PM)
but interior renovation should not matter

paper (Feb 4, 2010 9:07:01 PM)
i have allways hated this house

twinglema (Feb 4, 2010 9:07:09 PM)
if you own it

twinglema (Feb 4, 2010 9:07:17 PM)
hi liisau

twinglema (Feb 4, 2010 9:07:21 PM)
long time no see

paper (Feb 4, 2010 9:07:22 PM)
i have allready tryed to get things changed here

liisau (Feb 4, 2010 9:07:23 PM)
good evening all!

twinglema (Feb 4, 2010 9:07:30 PM)
how have you been/

paper (Feb 4, 2010 9:07:31 PM)
hi liisau

twinglema (Feb 4, 2010 9:07:32 PM)
?

liisau (Feb 4, 2010 9:07:37 PM)
been difficult translating to Moutain time

twinglema (Feb 4, 2010 9:07:55 PM)
2 hours earlier right?

liisau (Feb 4, 2010 9:07:59 PM)
I've been great and you?

liisau (Feb 4, 2010 9:08:07 PM)
renovations the topic?

twinglema (Feb 4, 2010 9:08:08 PM)
i am one hour earlier

liisau (Feb 4, 2010 9:08:13 PM)
yes that is right

twinglema (Feb 4, 2010 9:08:16 PM)
among other stuff

twinglema (Feb 4, 2010 9:08:24 PM)
like we are getting snow AGAIN

liisau (Feb 4, 2010 9:08:36 PM)
LOL

twinglema (Feb 4, 2010 9:08:38 PM)
the really wet stuff

paper (Feb 4, 2010 9:08:46 PM)
we have ground out in county we just dont have money to build there cause just to hook onto county water there now is 10000

liisau (Feb 4, 2010 9:08:49 PM)
we've had almost nothing notable

twinglema (Feb 4, 2010 9:08:53 PM)
it turns into snowballs before it hits the ground!

paper (Feb 4, 2010 9:08:58 PM)
lol

liisau (Feb 4, 2010 9:09:03 PM)
10K ouh

liisau (Feb 4, 2010 9:09:05 PM)
ouch

twinglema (Feb 4, 2010 9:09:07 PM)
wow paper

liisau (Feb 4, 2010 9:09:13 PM)
ouch indeed

twinglema (Feb 4, 2010 9:09:30 PM)
well we got 12 inches just in ajnuary

twinglema (Feb 4, 2010 9:09:34 PM)
january

liisau (Feb 4, 2010 9:09:36 PM)
I know the house thing is so frustrating

paper (Feb 4, 2010 9:09:41 PM)
ya so we have rented it out to a farmer he pays us all of 400 a year that covers the taxes

liisau (Feb 4, 2010 9:09:43 PM)
I wish we did

twinglema (Feb 4, 2010 9:09:49 PM)
my hands are still shaking form terror drive home in it

liisau (Feb 4, 2010 9:09:54 PM)
I'm in Colorado for God's ske

liisau (Feb 4, 2010 9:09:55 PM)
ake

twinglema (Feb 4, 2010 9:10:02 PM)
lol

twinglema (Feb 4, 2010 9:10:09 PM)
raise his rent

paper (Feb 4, 2010 9:10:27 PM)
all he does with it is raise hay

twinglema (Feb 4, 2010 9:10:34 PM)
well at least this new snow will cover up the old grey stuff

paper (Feb 4, 2010 9:10:51 PM)
it keeps the weeds down and he gets great hay out of the feild so we can keep the land

liisau (Feb 4, 2010 9:10:57 PM)
paper, have you considred the home makeover shows?

twinglema (Feb 4, 2010 9:10:58 PM)
that is good

twinglema (Feb 4, 2010 9:11:05 PM)
yeah!

liisau (Feb 4, 2010 9:11:14 PM)
I keep an eye out for that all the time

paper (Feb 4, 2010 9:11:18 PM)
ya i wish we could do that it would be fun

liisau (Feb 4, 2010 9:11:28 PM)
indeed!

twinglema (Feb 4, 2010 9:11:31 PM)
you could always send in a video

liisau (Feb 4, 2010 9:11:35 PM)
if you need the link, let me know

paper (Feb 4, 2010 9:11:40 PM)
but i would hate to see taxes on one them houses

liisau (Feb 4, 2010 9:11:43 PM)
how are our boys

twinglema (Feb 4, 2010 9:11:44 PM)
amen

twinglema (Feb 4, 2010 9:11:52 PM)
mine is pretty good

liisau (Feb 4, 2010 9:11:54 PM)
at this rate in the economy....bad

twinglema (Feb 4, 2010 9:11:57 PM)
putting on some weight

liisau (Feb 4, 2010 9:12:08 PM)
is the weight good for him?

twinglema (Feb 4, 2010 9:12:11 PM)
but still walking

liisau (Feb 4, 2010 9:12:18 PM)
some boys are so skinny

twinglema (Feb 4, 2010 9:12:23 PM)
prob not but he needs the steriods

liisau (Feb 4, 2010 9:12:24 PM)
good to hear!

liisau (Feb 4, 2010 9:12:32 PM)
ah....we will start next week

twinglema (Feb 4, 2010 9:12:33 PM)
he is no obese, just a little chunky

paper (Feb 4, 2010 9:12:37 PM)
our house here in the town the taxes are 1500 a half and here in the county it would be way higher

twinglema (Feb 4, 2010 9:12:49 PM)
he put on very little weight the first 5 years

twinglema (Feb 4, 2010 9:13:10 PM)
how old is he liisau?6?

twinglema (Feb 4, 2010 9:13:45 PM)
i went down our hill tonight with my tires cranked all the way to the right-i thought they were straight

liisau (Feb 4, 2010 9:13:47 PM)
@ paper, hopefully you can wrap those taxes in the mortgage somehow. @twinglema, good for him keeping most of it off. C is 4.5

twinglema (Feb 4, 2010 9:13:50 PM)
it is slick!

liisau (Feb 4, 2010 9:14:03 PM)
slick like hair grease

twinglema (Feb 4, 2010 9:14:16 PM)
yeah, steering wheel was useless

liisau (Feb 4, 2010 9:14:23 PM)
usually they are LOL

paper (Feb 4, 2010 9:14:38 PM)
my hubby has allready put in for a vacation day tomarrow so he dont have to drive in the snow

twinglema (Feb 4, 2010 9:15:00 PM)
i have to get kids to school clear across town

paper (Feb 4, 2010 9:15:11 PM)
and we are to get rain and sleet tonight befor the snow

liisau (Feb 4, 2010 9:15:26 PM)
try an empty parking lot for donuts!! and then go to Krispy Kremes ;-)

paper (Feb 4, 2010 9:15:28 PM)
they might not be having school

twinglema (Feb 4, 2010 9:15:34 PM)
what made me mad is we have know for 2 days this was coming, and it is still 32 degrees, a little salt and it would all have water

paper (Feb 4, 2010 9:15:35 PM)
lol

twinglema (Feb 4, 2010 9:15:51 PM)
lol liisau

twinglema (Feb 4, 2010 9:16:22 PM)
oh no, they have to have school cuz they have an overnight church thing tomorrow and i don't want that cancelled lol

liisau (Feb 4, 2010 9:16:38 PM)
they have amazing road treating stuff here, but you better wash it off the car as soon as you can.

paper (Feb 4, 2010 9:16:41 PM)
hubby went to the store today to get bread and milk and there was no bread at one store so he had to go to the other one also

liisau (Feb 4, 2010 9:16:50 PM)
we have our first IEP meeting next week

twinglema (Feb 4, 2010 9:17:02 PM)
oh fun

liisau (Feb 4, 2010 9:17:09 PM)
while intellect is great, he is having behavioral issues

liisau (Feb 4, 2010 9:17:16 PM)
BEFORE steroids

liisau (Feb 4, 2010 9:17:21 PM)
so we picked deflazacort

momma (Feb 4, 2010 9:17:24 PM)
back for a few

twinglema (Feb 4, 2010 9:17:25 PM)
i have found if you go in well informed they go well

liisau (Feb 4, 2010 9:17:28 PM)
hi momma

twinglema (Feb 4, 2010 9:17:34 PM)
thats what we use lisa

twinglema (Feb 4, 2010 9:17:37 PM)
wb momma

paper (Feb 4, 2010 9:17:39 PM)
i hate iep meetings

twinglema (Feb 4, 2010 9:17:56 PM)
i have been very lucky i guess, ours go great

paper (Feb 4, 2010 9:18:02 PM)
the school system here sucks

liisau (Feb 4, 2010 9:18:07 PM)
His pre-K teacher has a disability and her daughter does, so I'm hoping this will help

twinglema (Feb 4, 2010 9:18:07 PM)
luke had behave problems at first too

twinglema (Feb 4, 2010 9:18:27 PM)
we are getting snow agin momma

liisau (Feb 4, 2010 9:18:30 PM)
did the deflazacort make any changes in that?

liisau (Feb 4, 2010 9:18:38 PM)
How's Kent momma?

twinglema (Feb 4, 2010 9:18:38 PM)
oh yes, night and day differnce

momma (Feb 4, 2010 9:18:44 PM)
yea us too but only 1 -2 inches

liisau (Feb 4, 2010 9:18:50 PM)
what has been so distressful about it, paper?

momma (Feb 4, 2010 9:18:54 PM)
kents doing better

twinglema (Feb 4, 2010 9:18:58 PM)
us too but i ahve never had so many probs driving

twinglema (Feb 4, 2010 9:19:05 PM)
go kent!

liisau (Feb 4, 2010 9:19:09 PM)
ditto

twinglema (Feb 4, 2010 9:19:13 PM)
eating going ok?

momma (Feb 4, 2010 9:19:14 PM)
do you have snow on the ground now twingle?

twinglema (Feb 4, 2010 9:19:19 PM)
yes

twinglema (Feb 4, 2010 9:19:25 PM)
the real heavy stuff

paper (Feb 4, 2010 9:19:29 PM)
here when they get in 7th they only do inclusion they only help out as little as they can

liisau (Feb 4, 2010 9:19:33 PM)
we woke up to 1-2 inches of snow this morning but all melted by noon

momma (Feb 4, 2010 9:19:34 PM)
no he can eat only very small amounts

paper (Feb 4, 2010 9:19:52 PM)
and it just makes me mad

twinglema (Feb 4, 2010 9:19:53 PM)
i went down our hill with wheels cranked sideways and i thought thwy were straight!

liisau (Feb 4, 2010 9:19:54 PM)
hmmm...interesting, paper

momma (Feb 4, 2010 9:19:57 PM)
some days i think he should eat at all

liisau (Feb 4, 2010 9:20:18 PM)
he should or should not, momma?

twinglema (Feb 4, 2010 9:20:18 PM)
maybe you need to get some bigger guns into meetings cuz the law is the law

liisau (Feb 4, 2010 9:20:33 PM)
paper, agreed with twinglema.

liisau (Feb 4, 2010 9:20:39 PM)
what state are you in?

twinglema (Feb 4, 2010 9:20:49 PM)
if i had to i would have md staff and a lawyer with me

paper (Feb 4, 2010 9:20:53 PM)
my girl kat has had a brain injury and has gotten tons better over the years and she needs help a lot of help

momma (Feb 4, 2010 9:21:02 PM)
i told kent we had to get used to a new normal not eat by mouth that is

twinglema (Feb 4, 2010 9:21:14 PM)
it hurts his tummy momma?

liisau (Feb 4, 2010 9:21:18 PM)
oh boy, mommy and paper

twinglema (Feb 4, 2010 9:21:52 PM)
well if he wants the taste let him be a super model and chew it and spit it out!

paper (Feb 4, 2010 9:22:06 PM)
and just cause she wants a diploma then they do inclusion study and they only help her for 1 hr a day in front of other kids

twinglema (Feb 4, 2010 9:22:24 PM)
would you want her seperated?

liisau (Feb 4, 2010 9:22:25 PM)
while I know you guys have been in this game way longer than we want, but did it overwhelm you when it was time to start the steroids?

twinglema (Feb 4, 2010 9:22:31 PM)
i like luke with the other kids

twinglema (Feb 4, 2010 9:22:45 PM)
yeah

liisau (Feb 4, 2010 9:22:47 PM)
I lost it for over an hour after making the phone call to get all the referrals we need

momma (Feb 4, 2010 9:22:51 PM)
its just not the same things get stuck in g tube and and he gags and dry heaves but really he doing good i would be crazy of i could eat

twinglema (Feb 4, 2010 9:22:51 PM)
it made it more real lisa

paper (Feb 4, 2010 9:22:55 PM)
and she is just so shy she needs the one on one but she dont need to be pointed out

liisau (Feb 4, 2010 9:23:01 PM)
and to realize it was time to start this stuff

twinglema (Feb 4, 2010 9:23:06 PM)
me too momma

twinglema (Feb 4, 2010 9:23:13 PM)
yes lisa

twinglema (Feb 4, 2010 9:23:26 PM)
it would prob be good for me though

liisau (Feb 4, 2010 9:23:32 PM)
momma, eek...

momma (Feb 4, 2010 9:23:42 PM)
yea

twinglema (Feb 4, 2010 9:23:45 PM)
but the pay off has been worth it, he is still walking and almost 13

twinglema (Feb 4, 2010 9:24:25 PM)
how is kent dealing with that momma?

liisau (Feb 4, 2010 9:24:27 PM)
paper, you'd rather her have the private learning then?

liisau (Feb 4, 2010 9:24:57 PM)
I'm glad, twinglema. I think it was just our first big step in this.

paper (Feb 4, 2010 9:25:01 PM)
and now that we know that mh caused the brain injury and everything else it would just be nice that she could learn at her own pace instead of playing catch up all the time

momma (Feb 4, 2010 9:25:14 PM)
probably better than me thats a moms job to feed your kids i just feel guilty

liisau (Feb 4, 2010 9:25:31 PM)
totally understand momma and paper - on the diff topics

twinglema (Feb 4, 2010 9:25:45 PM)
i know kent would not want uyou to feel guilty, and you are feeding him in the best way for him

momma (Feb 4, 2010 9:25:47 PM)
sorry i should jump in like that

paper (Feb 4, 2010 9:25:58 PM)
it is just that they are our babys right momma

liisau (Feb 4, 2010 9:25:58 PM)
no no, this is working fine

twinglema (Feb 4, 2010 9:25:58 PM)
we all do that momma lol

momma (Feb 4, 2010 9:26:00 PM)
your right twingle

liisau (Feb 4, 2010 9:26:21 PM)
yup, I threw my thing in there too out of no where

twinglema (Feb 4, 2010 9:26:26 PM)
you wouldnt give a baby a steak-you are doing the right thing

paper (Feb 4, 2010 9:26:27 PM)
kat is my youngest and has allways been my sickest

liisau (Feb 4, 2010 9:26:34 PM)
what's mh?

liisau (Feb 4, 2010 9:26:57 PM)
how long has it been now for kent on the g tube?

paper (Feb 4, 2010 9:26:59 PM)
milgant hyperthermia

twinglema (Feb 4, 2010 9:27:03 PM)
lisa dont worry but around age 6-7 go get a heart and pulmo eval so you have a baseline for later

paper (Feb 4, 2010 9:27:03 PM)
sp?

liisau (Feb 4, 2010 9:27:04 PM)
oh oh yes

liisau (Feb 4, 2010 9:27:21 PM)
I have our medical bracelets from the group about that

paper (Feb 4, 2010 9:27:30 PM)
ya that is important with any md

twinglema (Feb 4, 2010 9:27:57 PM)
even as a carrier if you have surgery follow the guidelines

liisau (Feb 4, 2010 9:27:59 PM)
he's already had an echo and he's fine there

twinglema (Feb 4, 2010 9:28:05 PM)
awesome

twinglema (Feb 4, 2010 9:28:10 PM)
lukes last one was still fine

momma (Feb 4, 2010 9:28:16 PM)
well gotta finish helping kent mabey be back

liisau (Feb 4, 2010 9:28:17 PM)
we've started the pulmonary peak flow stuff

twinglema (Feb 4, 2010 9:28:20 PM)
heart doc only sees him every other year

paper (Feb 4, 2010 9:28:22 PM)
i think when i had that spasm today at ot i spraned my wrist

liisau (Feb 4, 2010 9:28:24 PM)
glad to hear lukes was good

liisau (Feb 4, 2010 9:28:34 PM)
good nite momma and big hugs for you and kent

paper (Feb 4, 2010 9:28:42 PM)
huggles momma

twinglema (Feb 4, 2010 9:28:42 PM)
luke likes the pulmo stuff cuz he feels like an astronaut in the chamber

twinglema (Feb 4, 2010 9:28:47 PM)
night momma

paper (Feb 4, 2010 9:28:49 PM)
lol

twinglema (Feb 4, 2010 9:28:53 PM)
take good care

liisau (Feb 4, 2010 9:28:58 PM)
lol

twinglema (Feb 4, 2010 9:29:32 PM)
and he liked his long leg brace cuz it was black so looked like darth vadoer

twinglema (Feb 4, 2010 9:29:36 PM)
vader

liisau (Feb 4, 2010 9:29:36 PM)
is luke taking any growth hormone stuff?

liisau (Feb 4, 2010 9:29:44 PM)
vader rocks!

twinglema (Feb 4, 2010 9:29:52 PM)
no because a study done on dmd boys showed it di not help

paper (Feb 4, 2010 9:29:56 PM)
lol what ever get the kid through it

liisau (Feb 4, 2010 9:30:00 PM)
connor picked batman for night boots

twinglema (Feb 4, 2010 9:30:06 PM)
well, if only he wore them all night!

twinglema (Feb 4, 2010 9:30:19 PM)
we drew on lukes

twinglema (Feb 4, 2010 9:30:31 PM)
you doing growth hormones?

twinglema (Feb 4, 2010 9:30:46 PM)
i tell luke better to be short and walking than tall and in a wc

liisau (Feb 4, 2010 9:30:48 PM)
lol, there's a small upside to the fact that connor's hand muscles are too weak to take them off

liisau (Feb 4, 2010 9:30:59 PM)
good comment!

paper (Feb 4, 2010 9:31:00 PM)
lol

liisau (Feb 4, 2010 9:31:14 PM)
no growth hormones. I was curious if it was worth taking for the height

twinglema (Feb 4, 2010 9:31:23 PM)
i told him i could make him wear them in the daytime so i know they are on!

liisau (Feb 4, 2010 9:31:25 PM)
but I think there are some big side effects

twinglema (Feb 4, 2010 9:31:36 PM)
his heal cords and hips are pretty tight

twinglema (Feb 4, 2010 9:31:48 PM)
yeah, i would not give them to my kids

liisau (Feb 4, 2010 9:31:50 PM)
is he sticking with the stretches pretty well

liisau (Feb 4, 2010 9:32:11 PM)
poor connor already has to fight my 5'2" height influence

liisau (Feb 4, 2010 9:32:15 PM)
LOL

twinglema (Feb 4, 2010 9:32:21 PM)
well, when he is here-basketball all but wednesday and buy time he gets home and eats it is bedtime

liisau (Feb 4, 2010 9:32:40 PM)
fun and quick...needs the sleep I'm sure

twinglema (Feb 4, 2010 9:32:40 PM)
hey, i'm five 1!

liisau (Feb 4, 2010 9:32:49 PM)
tee hee

paper (Feb 4, 2010 9:33:01 PM)
ha ha shortys

liisau (Feb 4, 2010 9:33:04 PM)
lol

twinglema (Feb 4, 2010 9:33:06 PM)
he once said he wants to play pro ball

paper (Feb 4, 2010 9:33:06 PM)
i am 5 8

liisau (Feb 4, 2010 9:33:21 PM)
oh wow...I'd love just a bit of that

twinglema (Feb 4, 2010 9:33:21 PM)
i told him look at your dad, look at me, pick something else

paper (Feb 4, 2010 9:33:42 PM)
my 15 son he is 5' 10

liisau (Feb 4, 2010 9:33:42 PM)
awwww. he could be a guard?

twinglema (Feb 4, 2010 9:33:47 PM)
my best friend is 5'11" we are quiet the pair

paper (Feb 4, 2010 9:33:57 PM)
and my girl is 5'9 and she is only 13

twinglema (Feb 4, 2010 9:33:58 PM)
maybe

liisau (Feb 4, 2010 9:33:58 PM)
the tallness runs strong with you!

liisau (Feb 4, 2010 9:34:17 PM)
Connor is taking piano lessons

twinglema (Feb 4, 2010 9:34:22 PM)
he plays most games for a few minutes

liisau (Feb 4, 2010 9:34:23 PM)
he's having so much fun

liisau (Feb 4, 2010 9:34:29 PM)
oh good!

paper (Feb 4, 2010 9:34:29 PM)
heheh when kat was born the dr told us she would be around 6

twinglema (Feb 4, 2010 9:34:33 PM)
he falls alot but is having fun

liisau (Feb 4, 2010 9:34:46 PM)
i guess hubby is tall too, eh paper?

twinglema (Feb 4, 2010 9:34:51 PM)
they call him leprchaun and ask for his gold!

liisau (Feb 4, 2010 9:34:56 PM)
lol

paper (Feb 4, 2010 9:34:58 PM)
not really he is 5'9

paper (Feb 4, 2010 9:35:05 PM)
lol

twinglema (Feb 4, 2010 9:35:08 PM)
so is mine!

liisau (Feb 4, 2010 9:35:10 PM)
then what did you eat when you were pregnant!!! lol

twinglema (Feb 4, 2010 9:35:18 PM)
string beans

paper (Feb 4, 2010 9:35:21 PM)
both are throw backs to their grandpas

liisau (Feb 4, 2010 9:35:36 PM)
ROFLMAO

paper (Feb 4, 2010 9:35:40 PM)
lol not much kat was 10lbs 2 oz at birth

twinglema (Feb 4, 2010 9:35:48 PM)
wow!

paper (Feb 4, 2010 9:36:02 PM)
ya had both of them natural too hehhe

twinglema (Feb 4, 2010 9:36:18 PM)
i delevered 14 pounds-of course there were 2 of them lol

paper (Feb 4, 2010 9:36:19 PM)
dr delivered kat in his suit

paper (Feb 4, 2010 9:36:26 PM)
lol

liisau (Feb 4, 2010 9:36:29 PM)
oh my

paper (Feb 4, 2010 9:36:46 PM)
he came running down the hall and slid in to the room heheh

liisau (Feb 4, 2010 9:36:48 PM)
mine were c-sctions so no worry about fitting them through!

twinglema (Feb 4, 2010 9:36:55 PM)
mine too lol

twinglema (Feb 4, 2010 9:37:20 PM)
and i was so out of it with the boys i thought their blue skin tone was pretty!

paper (Feb 4, 2010 9:37:29 PM)
lol

twinglema (Feb 4, 2010 9:37:43 PM)
they just needed a little o2 then were fine

paper (Feb 4, 2010 9:37:44 PM)
good old drugs

twinglema (Feb 4, 2010 9:38:01 PM)
well they did bag luke but only a couple times

twinglema (Feb 4, 2010 9:38:10 PM)
he always was the slow one

twinglema (Feb 4, 2010 9:38:32 PM)
when i was pregnant with him i called him stiffy boy cuz he never moved

liisau (Feb 4, 2010 9:39:04 PM)
okay ladies. it's back to school work for me. good old biology! wish me luck!

liisau (Feb 4, 2010 9:39:09 PM)
night night

twinglema (Feb 4, 2010 9:39:12 PM)
gotta put away soup brb

paper (Feb 4, 2010 9:39:12 PM)
i was so sick when i was pregers with kat i hardly even gained anything

twinglema (Feb 4, 2010 9:39:14 PM)
night lisa

paper (Feb 4, 2010 9:39:20 PM)
night lisa

twinglema (Feb 4, 2010 9:39:21 PM)
glad to see you

liisau (Feb 4, 2010 9:39:29 PM)
glad to see you too

liisau (Feb 4, 2010 9:39:31 PM)
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paper (Feb 4, 2010 9:40:13 PM)
well i am going to go to my hand is hurting nice chatting huggles to you both night

paper (Feb 4, 2010 9:40:15 PM)
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twinglema (Feb 4, 2010 9:44:21 PM)
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momma (Feb 4, 2010 9:54:18 PM)
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momma (Feb 4, 2010 9:55:02 PM)
(This user has entered DMD Parent Chat)

momma (Feb 4, 2010 9:55:05 PM)
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