DMD Parent Chat
momma (Jun 30, 2009 7:59:01 PM)
anna (Jun 30, 2009 8:00:05 PM)
(This user has entered DMD Parent Chat)
momma (Jun 30, 2009 8:00:15 PM)
hi anna
anna (Jun 30, 2009 8:00:25 PM)
Hi--just us again?
momma (Jun 30, 2009 8:00:30 PM)
yep
momma (Jun 30, 2009 8:00:33 PM)
same ole
anna (Jun 30, 2009 8:00:50 PM)
today is hubby's bd so when he arrives I have to go make a fuss over him
momma (Jun 30, 2009 8:00:55 PM)
ok
anna (Jun 30, 2009 8:01:00 PM)
61
momma (Jun 30, 2009 8:01:16 PM)
got kent weighed today finally
momma (Jun 30, 2009 8:01:21 PM)
wow old man lol
anna (Jun 30, 2009 8:01:30 PM)
how much?
momma (Jun 30, 2009 8:01:34 PM)
173.2
anna (Jun 30, 2009 8:01:51 PM)
wow--no feeding tube needed for weight there
momma (Jun 30, 2009 8:01:55 PM)
so hes up 22 in past 1 1/2
momma (Jun 30, 2009 8:02:21 PM)
well not for weight they way it set it helps his bowles move
anna (Jun 30, 2009 8:02:35 PM)
but good for hydration too
momma (Jun 30, 2009 8:02:39 PM)
yes
anna (Jun 30, 2009 8:03:18 PM)
our friend had his removed and the hole is still there about a year later
momma (Jun 30, 2009 8:03:28 PM)
i called gi with old tube we got like a canister full of gastiric fluids now only get a few drops?
anna (Jun 30, 2009 8:03:57 PM)
probably because he had it for about 10 years. what did he say about that?
momma (Jun 30, 2009 8:03:59 PM)
oh really wow
Mama (Jun 30, 2009 8:04:20 PM)
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momma (Jun 30, 2009 8:04:20 PM)
i talked to nurse she didnt call back yet
anna (Jun 30, 2009 8:04:39 PM)
probably is different place??
momma (Jun 30, 2009 8:04:56 PM)
she was gonna talk to dr visiting nurse said mabey tube isnt as far down
momma (Jun 30, 2009 8:05:01 PM)
hi mama
anna (Jun 30, 2009 8:05:22 PM)
another mama?
Mama (Jun 30, 2009 8:05:24 PM)
Hi I was supposed to go to fa CHAT
Mama (Jun 30, 2009 8:05:33 PM)
NO ONE THERE
momma (Jun 30, 2009 8:05:50 PM)
well dr said he didnt have a heal as he had hoped
anna (Jun 30, 2009 8:05:54 PM)
you are welcome here--you just missed FA chat
momma (Jun 30, 2009 8:05:55 PM)
welcome here
Mama (Jun 30, 2009 8:06:06 PM)
Thanks
anna (Jun 30, 2009 8:06:15 PM)
we are dmd moms
anna (Jun 30, 2009 8:06:29 PM)
but my friend has FA so I am familiar with it
Mama (Jun 30, 2009 8:06:40 PM)
How old are your kiddos? mine 13 boy
Mama (Jun 30, 2009 8:06:46 PM)
Really?
momma (Jun 30, 2009 8:06:59 PM)
so how is your health mama?
anna (Jun 30, 2009 8:07:01 PM)
my son is 29
momma (Jun 30, 2009 8:07:07 PM)
my son is 23
Mama (Jun 30, 2009 8:07:22 PM)
mine is good thanks, you?
anna (Jun 30, 2009 8:07:24 PM)
does your son have FA, or you?
Mama (Jun 30, 2009 8:07:30 PM)
my son
momma (Jun 30, 2009 8:07:40 PM)
oh i mean your son oops
anna (Jun 30, 2009 8:07:41 PM)
can he still walk ok?
Mama (Jun 30, 2009 8:07:42 PM)
diagnosed 3 years ago
momma (Jun 30, 2009 8:07:56 PM)
how old is he?
anna (Jun 30, 2009 8:08:00 PM)
13
Mama (Jun 30, 2009 8:08:07 PM)
using a chair more and more
anna (Jun 30, 2009 8:08:18 PM)
how is his attitude?
Mama (Jun 30, 2009 8:08:25 PM)
trying to keep him active
Mama (Jun 30, 2009 8:08:43 PM)
not good, he self pity
anna (Jun 30, 2009 8:08:46 PM)
my friend with FA got her BS degree same time we were at same University
Mama (Jun 30, 2009 8:09:02 PM)
thats great.
anna (Jun 30, 2009 8:09:17 PM)
she had aides at U and a service dog
anna (Jun 30, 2009 8:09:28 PM)
otherwise, was on her own
Mama (Jun 30, 2009 8:10:01 PM)
how old was she at diagnosis?
anna (Jun 30, 2009 8:10:24 PM)
one time drove her power chair down stairs---one time knocked toilet over and got trapped in restroomj
Mama (Jun 30, 2009 8:10:42 PM)
Holy Cow!!!
Mama (Jun 30, 2009 8:11:03 PM)
so how are your kiddos?
anna (Jun 30, 2009 8:11:28 PM)
thank goodness for cell pnones
Mama (Jun 30, 2009 8:11:42 PM)
definitely
anna (Jun 30, 2009 8:12:02 PM)
my son is on NIV and can only move 2 fingers, but works full-time as software engineer
Mama (Jun 30, 2009 8:12:10 PM)
I usually chat on the NAF chat room
Mama (Jun 30, 2009 8:12:23 PM)
WOW that is amazing
anna (Jun 30, 2009 8:12:25 PM)
yes, I have heard of that
momma (Jun 30, 2009 8:12:53 PM)
same here but but does a artical for aour special olympics
Mama (Jun 30, 2009 8:13:14 PM)
sometimes they get tired of my energy I think
Mama (Jun 30, 2009 8:13:28 PM)
Cool
anna (Jun 30, 2009 8:14:02 PM)
your son can do a lot IF he wants to. has he been able to meet others with FA?
Mama (Jun 30, 2009 8:14:04 PM)
since MDA camp was cancelled we are going to have some of the kids over this week to swim
anna (Jun 30, 2009 8:14:19 PM)
ok, that answers my question
Mama (Jun 30, 2009 8:14:41 PM)
yes, he is in a drug study at UCLA and we travel with another family
anna (Jun 30, 2009 8:14:48 PM)
do you live in sunny CA or FL?
anna (Jun 30, 2009 8:14:55 PM)
ok
Mama (Jun 30, 2009 8:14:56 PM)
TX
anna (Jun 30, 2009 8:15:16 PM)
oh, that IS a trip to CA for you
anna (Jun 30, 2009 8:15:29 PM)
so good you know another FA family
Mama (Jun 30, 2009 8:15:37 PM)
yes we make mini vacations of it
Mama (Jun 30, 2009 8:15:55 PM)
we have actually met 5 families
anna (Jun 30, 2009 8:15:58 PM)
I have relatives in TX--Quitman and San Antonio and Dallas area
Mama (Jun 30, 2009 8:16:11 PM)
we are in DFW area
anna (Jun 30, 2009 8:16:35 PM)
my Mom ws born in Grand Prairie
Mama (Jun 30, 2009 8:16:46 PM)
I need to go, the guys are here cutting our hay,
anna (Jun 30, 2009 8:17:00 PM)
nice meeting you
Mama (Jun 30, 2009 8:17:04 PM)
my best friend lives in Grand Prairie
anna (Jun 30, 2009 8:17:14 PM)
small world
Mama (Jun 30, 2009 8:17:28 PM)
very nice to meet you both, thanks for welcoming me
anna (Jun 30, 2009 8:17:41 PM)
hope to chat with you another time
Mama (Jun 30, 2009 8:17:50 PM)
thanks
Mama (Jun 30, 2009 8:17:51 PM)
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anna (Jun 30, 2009 8:18:35 PM)
good luck with your son--you are doing great to have other families to know
anna (Jun 30, 2009 8:18:55 PM)
your son won't feel all alone with his FA
anna (Jun 30, 2009 8:19:27 PM)
she is gone and I'm still chatting lol
momma (Jun 30, 2009 8:19:34 PM)
lol
momma (Jun 30, 2009 8:20:43 PM)
it was really cool here today only in the 60's
momma (Jun 30, 2009 8:20:55 PM)
kinda like it better than 90
anna (Jun 30, 2009 8:22:09 PM)
about 79 here
momma (Jun 30, 2009 8:22:16 PM)
sounds good
anna (Jun 30, 2009 8:22:20 PM)
R still wearing 3 layers at work
momma (Jun 30, 2009 8:22:52 PM)
oh boy
anna (Jun 30, 2009 8:22:57 PM)
just broke his joystick connector.......the replaceable part, not the expensive part
momma (Jun 30, 2009 8:23:15 PM)
thats good
anna (Jun 30, 2009 8:23:28 PM)
hubby on way home and he had machined a spare so we are okay--R just cannot use it for now
momma (Jun 30, 2009 8:23:49 PM)
thats stinks
anna (Jun 30, 2009 8:23:51 PM)
they are designed to snap off to protect the expensive workings
anna (Jun 30, 2009 8:24:20 PM)
isn't it lucky hubby works as a wc repairman?? something lucky happened today...
momma (Jun 30, 2009 8:24:28 PM)
yeah
anna (Jun 30, 2009 8:25:22 PM)
today my gf let me clean her foyer(she is the hoarder)
momma (Jun 30, 2009 8:25:46 PM)
that was nice of you
anna (Jun 30, 2009 8:26:12 PM)
it really is amazing as it is a very big problem for her as both she and her hubby are in wc and can barely get around their home
anna (Jun 30, 2009 8:26:49 PM)
it is hard to understand why everything seems so important to her, but hoarding is a psychological problem
momma (Jun 30, 2009 8:27:02 PM)
yea ill bet
anna (Jun 30, 2009 8:27:23 PM)
I filled my car for the Goodwill, and her boarder filled 5 large trash bags
momma (Jun 30, 2009 8:28:01 PM)
wow
momma (Jun 30, 2009 8:29:09 PM)
well anna im gonna check out
anna (Jun 30, 2009 8:29:15 PM)
me too
anna (Jun 30, 2009 8:29:19 PM)
ttyl
momma (Jun 30, 2009 8:29:33 PM)
ok night
momma (Jun 30, 2009 8:29:35 PM)
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trangeha (Jun 30, 2009 8:31:36 PM)
(This user has entered DMD Parent Chat)
trangeha (Jun 30, 2009 8:32:18 PM)
Hi-I'm Tracey-is anyone out there?
anna (Jun 30, 2009 8:32:45 PM)
hi
trangeha (Jun 30, 2009 8:32:54 PM)
hi, Anna
anna (Jun 30, 2009 8:33:01 PM)
almost missed you--I am the only one left on
anna (Jun 30, 2009 8:33:10 PM)
are you a dmd parent?
trangeha (Jun 30, 2009 8:33:14 PM)
I just registered and didn't realize there was a chat tonight
trangeha (Jun 30, 2009 8:33:24 PM)
yes-my 7 yr old son was just diagnosed a few weeks ago
anna (Jun 30, 2009 8:33:30 PM)
dmd chats 3 nights a week
anna (Jun 30, 2009 8:33:41 PM)
oh, so sorry to hear. how are you doing?
trangeha (Jun 30, 2009 8:33:51 PM)
ok-it depends on the day
trangeha (Jun 30, 2009 8:33:56 PM)
how old is your son?
anna (Jun 30, 2009 8:34:04 PM)
we didn't find out until my son was 7 either--not in our family at all
anna (Jun 30, 2009 8:34:07 PM)
28
trangeha (Jun 30, 2009 8:34:12 PM)
wow
trangeha (Jun 30, 2009 8:34:22 PM)
not in my family either
anna (Jun 30, 2009 8:34:31 PM)
he works full-time as software engineer
anna (Jun 30, 2009 8:34:39 PM)
such a horrilbe shock
trangeha (Jun 30, 2009 8:34:48 PM)
I think I may have seen some of your posts on ppmd-I remember the age and the job maybe?
trangeha (Jun 30, 2009 8:34:52 PM)
it really is
anna (Jun 30, 2009 8:35:06 PM)
yes, I do appear there from time to time
anna (Jun 30, 2009 8:35:32 PM)
the Thursday night chat has more parents usually
trangeha (Jun 30, 2009 8:35:32 PM)
so how is your son? if you know what I mean?
trangeha (Jun 30, 2009 8:35:57 PM)
I'll have to try to check it out
anna (Jun 30, 2009 8:36:09 PM)
he is so good for what he's got. I have not heard of too many that can work full-time at his age, but it is not impossible.
trangeha (Jun 30, 2009 8:36:10 PM)
it's hard to get the kids in bed before 9 in the summer
anna (Jun 30, 2009 8:36:53 PM)
we have to get to bed early as dmd guys need more sleep as they get older
anna (Jun 30, 2009 8:37:17 PM)
my son uses non-invasive venting and a HeadMouse to compute
trangeha (Jun 30, 2009 8:37:25 PM)
really
trangeha (Jun 30, 2009 8:37:34 PM)
I don't even know what a HeadMouse is
anna (Jun 30, 2009 8:37:38 PM)
how is your son doing? stairs hard to do?
trangeha (Jun 30, 2009 8:37:45 PM)
stairs are a bit hard, yes
anna (Jun 30, 2009 8:37:54 PM)
I remember
trangeha (Jun 30, 2009 8:37:55 PM)
overall I think he's doing ok
trangeha (Jun 30, 2009 8:38:11 PM)
did/do you do steroid therapy?
anna (Jun 30, 2009 8:38:15 PM)
what area of the country do you live in? have a good MDA clinic?
trangeha (Jun 30, 2009 8:38:22 PM)
we live in Western Michigan
anna (Jun 30, 2009 8:38:30 PM)
no, they were not really offered back then
trangeha (Jun 30, 2009 8:38:51 PM)
the doctor we see did her fellowship at Cincinnati Children's with Dr. Wong and seems like she has it together
anna (Jun 30, 2009 8:38:57 PM)
are you using them?
trangeha (Jun 30, 2009 8:39:06 PM)
we are probably going to start soon
trangeha (Jun 30, 2009 8:39:46 PM)
the dr really leans toward deflazacourt, so that's probably what we'll do
anna (Jun 30, 2009 8:40:25 PM)
it is a very hard thing to decide--the chat host on Thursday has a son who uses deflazacort
trangeha (Jun 30, 2009 8:41:02 PM)
I will definitely have to try to make it Thursday. Although I have talked with a few families in my area who use that and one uses prednisone
anna (Jun 30, 2009 8:41:18 PM)
but if there are bad side effects you will have to re-evaluate how important it is for son to walk an extra year or so
anna (Jun 30, 2009 8:41:44 PM)
you won't know unless you try
trangeha (Jun 30, 2009 8:42:37 PM)
right
trangeha (Jun 30, 2009 8:42:52 PM)
and they're supposed to help with cardio and pulmonary function too
trangeha (Jun 30, 2009 8:42:58 PM)
how old was your son when he stopped walking?
anna (Jun 30, 2009 8:43:11 PM)
8 1/2
trangeha (Jun 30, 2009 8:43:52 PM)
what brought about his diagnosis? was it common then that they got diagnosed "later"
anna (Jun 30, 2009 8:45:02 PM)
he couldn't run and we lived in small town where doc didn't recognize it
anna (Jun 30, 2009 8:45:15 PM)
his kindergarten teacher wanted him tested
trangeha (Jun 30, 2009 8:46:14 PM)
knowing what I know now, it's kind of hard for me to believe that not one person suspected MD for Seth
trangeha (Jun 30, 2009 8:46:49 PM)
he has had 2 pediatricians, was in Early On for late walking, saw three physical therapists throughout the years
anna (Jun 30, 2009 8:47:27 PM)
yes, in hindsight it does seem obvious
anna (Jun 30, 2009 8:47:41 PM)
but maybe it was best we didn't know for awhile
trangeha (Jun 30, 2009 8:47:42 PM)
but I keep telling myself, we have to deal with now
trangeha (Jun 30, 2009 8:47:44 PM)
right
trangeha (Jun 30, 2009 8:47:52 PM)
I think that too
trangeha (Jun 30, 2009 8:48:49 PM)
well, I should go but I am going to try hard to make it Thursday
anna (Jun 30, 2009 8:48:51 PM)
it is not awful, just different and unwanted
anna (Jun 30, 2009 8:48:59 PM)
ok, hope to chat later
anna (Jun 30, 2009 8:49:09 PM)
hang in there--there are rainbows
trangeha (Jun 30, 2009 8:49:11 PM)
that's good to hear you say-I'm hoping to get to the not awful stage
trangeha (Jun 30, 2009 8:49:18 PM)
thank you! We'll try
anna (Jun 30, 2009 8:49:23 PM)
goodnight
trangeha (Jun 30, 2009 8:49:26 PM)
night
trangeha (Jun 30, 2009 8:49:30 PM)
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anna (Jun 30, 2009 8:50:17 PM)
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