Myotonic Chat Group

bette (Dec 20, 2006 7:51:09 PM)
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PaRay (Dec 20, 2006 7:51:25 PM)
Hi Bette

bette (Dec 20, 2006 7:51:26 PM)
Hi Ray

PaRay (Dec 20, 2006 7:51:43 PM)
How are things on the west coast/

bette (Dec 20, 2006 7:54:14 PM)
It's been cold but beautiful out here. Not that I'm going out much. Other than enjoying all the court shows on TV and not getting out of bed iuntil they are almost all over, I am fine. Not much is getting done around the house but what the hay! How are you and Ann doing??

bette (Dec 20, 2006 7:55:43 PM)
Marcia has an errand to do tonight so she won't be on. She promises that she will be on next week.

PaRay (Dec 20, 2006 7:56:38 PM)
I heard that you were having cold weather. We have been warmer than usual here.

PaRay (Dec 20, 2006 7:57:02 PM)
We are getting ready for the Holidays.

bette (Dec 20, 2006 7:57:37 PM)
Cold by us is not COLD like you know it. It's been in the 50's during the day and 20's at night.

PaRay (Dec 20, 2006 7:58:29 PM)
That is about the same as we are having. Denver got the big snow.

REDHEADER (Dec 20, 2006 7:58:47 PM)
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PaRay (Dec 20, 2006 7:59:00 PM)
Hi Red.

bette (Dec 20, 2006 7:59:10 PM)
What are you dooing or the holidays. We have a group that has a pot-luck dinner for Hanukah. That was last Sunday. Good food, nice people. Mark's union has a Christmas Party tomorrow. Also should be good food. The people are OK

REDHEADER (Dec 20, 2006 7:59:22 PM)
Merry Christmas, Happy Hannukah, Happy Kwanzaa, Feliz, Navida, etc

bette (Dec 20, 2006 7:59:29 PM)
GHi Red, we have missed you.

REDHEADER (Dec 20, 2006 7:59:42 PM)
missed u guys too

bette (Dec 20, 2006 7:59:53 PM)
What are you doing for the holidays?

PaRay (Dec 20, 2006 8:00:35 PM)
We will be staying at home.

REDHEADER (Dec 20, 2006 8:00:36 PM)
just having a party with my family on saturday and going to my girlfriends house on christmas day

bette (Dec 20, 2006 8:00:56 PM)
Sound like good clean fun.

REDHEADER (Dec 20, 2006 8:01:32 PM)
wait until me and my girlfriend get back here (heh, heh, heh) just kidding

bette (Dec 20, 2006 8:02:10 PM)
I was thinking about that but didn't know how to put it.

REDHEADER (Dec 20, 2006 8:02:21 PM)
roflmao

elliebedelia (Dec 20, 2006 8:03:15 PM)
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bette (Dec 20, 2006 8:03:18 PM)
Can you get up off the floor after you stop laughting?

REDHEADER (Dec 20, 2006 8:03:28 PM)
Hiya Ellie! thanxfor the card

bette (Dec 20, 2006 8:03:28 PM)
Hi Ellie.

PaRay (Dec 20, 2006 8:03:40 PM)
Hi Ellie.

REDHEADER (Dec 20, 2006 8:03:55 PM)
with some minor grunting and groaning Bette

bette (Dec 20, 2006 8:04:16 PM)
What's it like in New Hampshire the wweek before x-mas? Any snow.

elliebedelia (Dec 20, 2006 8:04:25 PM)
Hi and good evening everyone

elliebedelia (Dec 20, 2006 8:05:05 PM)
no no snow just cold rain but Saturday is looking really badfor a storm

REDHEADER (Dec 20, 2006 8:05:35 PM)
no snow here either, just gray dull days

PaRay (Dec 20, 2006 8:05:39 PM)
We will probably get rain on Saturday here.

elliebedelia (Dec 20, 2006 8:06:09 PM)
yes ray 2 storms headed our way a bad mix

REDHEADER (Dec 20, 2006 8:06:17 PM)
eek

bette (Dec 20, 2006 8:06:35 PM)
I've been getting falsse advertising all these years. I thought a white x-mas had to be had in the east.

REDHEADER (Dec 20, 2006 8:06:50 PM)
Usually we get one

REDHEADER (Dec 20, 2006 8:07:17 PM)
Global Warming, Greenhouse Effect, Ozone Depletion, take your pick

elliebedelia (Dec 20, 2006 8:07:20 PM)
seems like we get less snow every yr and not good for us whho depend on skiers

PaRay (Dec 20, 2006 8:07:25 PM)
We have about a 50/50 chance.

bette (Dec 20, 2006 8:07:49 PM)
What do you depend on the Skiers for?

REDHEADER (Dec 20, 2006 8:08:03 PM)
Tourist income?

bette (Dec 20, 2006 8:08:36 PM)
Oh, never though of that Red.

elliebedelia (Dec 20, 2006 8:08:41 PM)
because we live in the white mountains and we depend on the tourists, well not me but the town does

BabyKayla (Dec 20, 2006 8:08:46 PM)
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BabyKayla (Dec 20, 2006 8:08:58 PM)
Hi Everyone!

elliebedelia (Dec 20, 2006 8:09:02 PM)
hi lisa

BabyKayla (Dec 20, 2006 8:09:02 PM)
Long time, huh?

REDHEADER (Dec 20, 2006 8:09:09 PM)
Hi babykayla

PaRay (Dec 20, 2006 8:09:11 PM)
Hi Lisa. You made it. LOL

bette (Dec 20, 2006 8:09:12 PM)
Hi Lisa, how is Kayla doing?

BabyKayla (Dec 20, 2006 8:09:16 PM)
Hey Red

BabyKayla (Dec 20, 2006 8:09:19 PM)
Hi Bette

BabyKayla (Dec 20, 2006 8:09:26 PM)
Hey ellie

BabyKayla (Dec 20, 2006 8:09:37 PM)
Kayla is doing well

BabyKayla (Dec 20, 2006 8:09:41 PM)
getting stronger everyday

bette (Dec 20, 2006 8:09:53 PM)
What are you planning for her christmas?

BabyKayla (Dec 20, 2006 8:09:54 PM)
she started crawling on her 16 month birthday

BabyKayla (Dec 20, 2006 8:10:07 PM)
(14 months adjusted)

BabyKayla (Dec 20, 2006 8:10:29 PM)
my family is coming up to Sacramento

bette (Dec 20, 2006 8:10:37 PM)
I know she stood before she started to crawl. Is she walkig at all.

REDHEADER (Dec 20, 2006 8:10:43 PM)
I have been having some problems swallowing again, for a long time (couple of years) they went away

BabyKayla (Dec 20, 2006 8:10:43 PM)
my sister, nieces and parents

elliebedelia (Dec 20, 2006 8:10:47 PM)
well now you really will have your hands full keeping your eye out for her she will be playing hide and seek

BabyKayla (Dec 20, 2006 8:11:00 PM)
She started cruising along the couch at 15 months old

REDHEADER (Dec 20, 2006 8:11:05 PM)
lol

BabyKayla (Dec 20, 2006 8:11:08 PM)
and is using a walker a little bit now

REDHEADER (Dec 20, 2006 8:11:12 PM)
thats cute

BabyKayla (Dec 20, 2006 8:11:14 PM)
but not walking on her own yet

REDHEADER (Dec 20, 2006 8:12:00 PM)
I lost another 3 lbs, that makes 8 since May

REDHEADER (Dec 20, 2006 8:12:27 PM)
going slow, but at least going the right direction

bette (Dec 20, 2006 8:12:45 PM)
How are you and Jeff doing?

elliebedelia (Dec 20, 2006 8:12:47 PM)
your doing good red it adds up. How did you get rid of those swallowing problems.

REDHEADER (Dec 20, 2006 8:13:02 PM)
wish I knew Ellie darlin'

REDHEADER (Dec 20, 2006 8:13:29 PM)
maybe I got so used to them i didn't notice them anymore

BabyKayla (Dec 20, 2006 8:13:42 PM)
we are ok........I'm tired though cause Jeff had surgery 4 weeks ago for a double hernia and I had two patients for 4 weeks

BabyKayla (Dec 20, 2006 8:13:45 PM)
LOL

REDHEADER (Dec 20, 2006 8:14:03 PM)
and they got worse, so it seems like they came back or something like that

bette (Dec 20, 2006 8:14:06 PM)
Hope Jeff is back to normal.

BabyKayla (Dec 20, 2006 8:14:21 PM)
not yet but he's getting there

bette (Dec 20, 2006 8:15:12 PM)
Wew must be vvery lucky. Mark had one hernia and he was back to work in less than a week.

elliebedelia (Dec 20, 2006 8:15:59 PM)
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bette (Dec 20, 2006 8:16:02 PM)
Lisa, I'm having a probelm with the bill from the Anesthsiologist(?). Do you know what yours charged for Jeff's surgery?

elliebedelia (Dec 20, 2006 8:16:25 PM)
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bette (Dec 20, 2006 8:16:57 PM)
It must be your turn to be knocked off tonigh Elliet.

REDHEADER (Dec 20, 2006 8:16:59 PM)
had a couple of enjoyable evenings, one Monday I watched Monty Python and The Holy Grail, and on Tuesday, I watched Monty Python and the Meaning Of Life

elliebedelia (Dec 20, 2006 8:17:02 PM)
i hate it when i`m right in the middle of typing and look up and the screen is all blank

REDHEADER (Dec 20, 2006 8:17:18 PM)
yeah that has to suck

REDHEADER (Dec 20, 2006 8:17:57 PM)
Got a new video game for my computer from Ebay

bette (Dec 20, 2006 8:18:16 PM)
Is it violent Red?

REDHEADER (Dec 20, 2006 8:18:41 PM)
all the battles are between space ships, so no blood is involved

PaRay (Dec 20, 2006 8:18:43 PM)
Bette...Ann's bill was approx. $1600 for her surgery.

REDHEADER (Dec 20, 2006 8:19:03 PM)
but there is a lot of research and diplomacy and such

elliebedelia (Dec 20, 2006 8:19:13 PM)
what surgery ray?

bette (Dec 20, 2006 8:19:13 PM)
\Ray, what was her surgery for?

PaRay (Dec 20, 2006 8:19:33 PM)
She had her stoma revised.

REDHEADER (Dec 20, 2006 8:19:42 PM)
stoma?

elliebedelia (Dec 20, 2006 8:19:43 PM)
in January I will have medicare coverage

PaRay (Dec 20, 2006 8:20:14 PM)
The surgens bill was $1090

bette (Dec 20, 2006 8:20:32 PM)
Great Ellie. I have medicare part a. Now that Mark is retireing I need to get part b

gypsy (Dec 20, 2006 8:20:36 PM)
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elliebedelia (Dec 20, 2006 8:20:45 PM)
hospital bills are so outragious I sure try to stay away

PaRay (Dec 20, 2006 8:21:17 PM)
Hey Gypsy. You close to the fires?

elliebedelia (Dec 20, 2006 8:21:19 PM)
i need caterac surgery sometime soon

bette (Dec 20, 2006 8:21:23 PM)
I guess the dr. is not that out of line. He charged 880.00 and the insurance paid 168.

gypsy (Dec 20, 2006 8:21:27 PM)
hi all :)

bette (Dec 20, 2006 8:21:35 PM)
Hi Gypsy

REDHEADER (Dec 20, 2006 8:21:43 PM)
hi gypsy! how are things down under? are you all set for Father Christmas?

elliebedelia (Dec 20, 2006 8:21:54 PM)
Hi gypsy so glad to see ya I mean hear from you

suziern (Dec 20, 2006 8:22:03 PM)
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suziern (Dec 20, 2006 8:22:16 PM)
Wow, did I get in tonight?

elliebedelia (Dec 20, 2006 8:22:18 PM)
hi susiern

REDHEADER (Dec 20, 2006 8:22:21 PM)
hi suziern

suziern (Dec 20, 2006 8:22:24 PM)
I have been trying for about 20 minutes

bette (Dec 20, 2006 8:22:33 PM)
Ellie, I'm pretty sure that medicare will cover at least part of the surgery. Hang in there until you get it.

suziern (Dec 20, 2006 8:22:39 PM)
Maybe I will not get thrown out

REDHEADER (Dec 20, 2006 8:22:44 PM)
shh

suziern (Dec 20, 2006 8:22:52 PM)
I was hoping to talk to Robyn

REDHEADER (Dec 20, 2006 8:22:54 PM)
you will jinx yourself

gypsy (Dec 20, 2006 8:22:55 PM)
no fortunatly ray not at the monent but really bad day here so hope we don't have any start near by

suziern (Dec 20, 2006 8:22:58 PM)
haha

bette (Dec 20, 2006 8:23:04 PM)
Hi Suzi. How are things doing iny our neck of the woods?

gypsy (Dec 20, 2006 8:23:09 PM)
i had troble gettin in here today too

suziern (Dec 20, 2006 8:23:11 PM)
I had some questions

REDHEADER (Dec 20, 2006 8:23:23 PM)
wierd, I had no trouble at all

elliebedelia (Dec 20, 2006 8:23:37 PM)
i had those kind of problems suzi but found out i was just being too anxius

gypsy (Dec 20, 2006 8:23:42 PM)
no not all set for xmas red

suziern (Dec 20, 2006 8:23:51 PM)
BillyDean's teacher said that she wants him to start "working out his fingers and hands". She wants him to start doing some page long handwriting and said that will help his hands. Has anyone heard of that helping?

REDHEADER (Dec 20, 2006 8:23:59 PM)
did all my shopping on the 7th

suziern (Dec 20, 2006 8:24:04 PM)
It has only caused his hands to cramp more in the past.

gypsy (Dec 20, 2006 8:24:13 PM)
haven't had truoble till the last few days then chat has been freezing my computer

suziern (Dec 20, 2006 8:24:14 PM)
So I told her I would get back to her about that first.

gypsy (Dec 20, 2006 8:24:24 PM)
wow wish i could be that oganised

suziern (Dec 20, 2006 8:24:26 PM)
I had not heard of forcing writing as a way to help it

gypsy (Dec 20, 2006 8:24:36 PM)
and still have heaps of gardening to do too

REDHEADER (Dec 20, 2006 8:24:37 PM)
Mom took me to Wal-Mart and then the Mall and I got it all done

suziern (Dec 20, 2006 8:24:48 PM)
He can barely write his name and maybe one sentence before he starts complaining of the cramping

gypsy (Dec 20, 2006 8:24:57 PM)
we don't have a wal mart here :(

elliebedelia (Dec 20, 2006 8:25:05 PM)
wow red what would we do without mothers

REDHEADER (Dec 20, 2006 8:25:05 PM)
does he take any muscle relaxants?

gypsy (Dec 20, 2006 8:25:15 PM)
have to walk around and around the street :(

suziern (Dec 20, 2006 8:25:18 PM)
no he doesn't

suziern (Dec 20, 2006 8:25:34 PM)
He is only on Bipap at night and uses orthotics

suziern (Dec 20, 2006 8:25:34 PM)
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REDHEADER (Dec 20, 2006 8:25:39 PM)
I take Quinine Sulfate, and my hands are pretty good

bette (Dec 20, 2006 8:25:54 PM)
Suzi, it makes no sense to me.

REDHEADER (Dec 20, 2006 8:26:04 PM)
used to take Dilantin, but we won't talk about that med (shudder)

elliebedelia (Dec 20, 2006 8:26:26 PM)
i thought they outlawed sulfer drug but maybe that was only in cattle

REDHEADER (Dec 20, 2006 8:26:40 PM)
moo

elliebedelia (Dec 20, 2006 8:26:48 PM)
shudder shudder here too

suziern (Dec 20, 2006 8:27:13 PM)
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bette (Dec 20, 2006 8:27:22 PM)
wb

suziern (Dec 20, 2006 8:27:33 PM)
Thanks, also before I get thrown out again......

REDHEADER (Dec 20, 2006 8:27:35 PM)
toldya :)

elliebedelia (Dec 20, 2006 8:27:40 PM)
where is marchamellows tonight

suziern (Dec 20, 2006 8:28:00 PM)
I am going to Washington DC February 11 to 13 to advocate for MD funding on Capitol Hill and was wondering if anyone else could go.

bette (Dec 20, 2006 8:28:09 PM)
She had an errand she had to run with for Mom. She'll be back next week.

elliebedelia (Dec 20, 2006 8:28:28 PM)
well suziern I thank you for doing that

suziern (Dec 20, 2006 8:28:34 PM)
Does anyone live near DC area?

REDHEADER (Dec 20, 2006 8:28:41 PM)
yes, thank you

REDHEADER (Dec 20, 2006 8:28:52 PM)
nope, not me

elliebedelia (Dec 20, 2006 8:28:56 PM)
NH here about 12 hrs away

bette (Dec 20, 2006 8:29:05 PM)
Wish I could go but it's a bit too far and Mark will still be working. Good luck

suziern (Dec 20, 2006 8:29:23 PM)
Well I have never been before so not sure what to expect

elliebedelia (Dec 20, 2006 8:29:27 PM)
where do you live suzi

gypsy (Dec 20, 2006 8:29:37 PM)
how is the new cat going red ?

suziern (Dec 20, 2006 8:29:42 PM)
I will be going to sessions for 2 days advocating to congress for MD funding

suziern (Dec 20, 2006 8:29:51 PM)
Indianapolis, Indiana

gypsy (Dec 20, 2006 8:29:57 PM)
that great suzi

suziern (Dec 20, 2006 8:30:06 PM)
I am starting an MMD group here in Indy. My first meeting is January 13th

REDHEADER (Dec 20, 2006 8:30:09 PM)
pretty good, still gets on my nerves sometimes, she is only 7!/2 month olds

bette (Dec 20, 2006 8:30:22 PM)
How were you able to get to doit?

gypsy (Dec 20, 2006 8:30:35 PM)
lol mine do that too and they and the youngest is about 3

suziern (Dec 20, 2006 8:30:46 PM)
I called and begged to let me in to advocate

gypsy (Dec 20, 2006 8:30:50 PM)
specailly when they sit in the raod of where i'm trying to walk

suziern (Dec 20, 2006 8:30:59 PM)
I am trying to decide if I should bring Billydean

gypsy (Dec 20, 2006 8:31:13 PM)
nearly been triped a few times by the young one :(

REDHEADER (Dec 20, 2006 8:31:35 PM)
or lay where you are reading or working, or want affection at the least opportune times

suziern (Dec 20, 2006 8:31:47 PM)
the language matter is very to the point and the desperation for the funding and I am not sure yet if he should listen to that both days. I may go this year by myself and see how it goes and take him next year

suziern (Dec 20, 2006 8:31:47 PM)
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bette (Dec 20, 2006 8:31:49 PM)
If Billydean is up to it, I would. It can't hurt and it might open some hearts. How is he doing in his new role?

REDHEADER (Dec 20, 2006 8:31:52 PM)
almost tripped here too

elliebedelia (Dec 20, 2006 8:32:23 PM)
my cats are like that too they are so spoiled. they train us to live around them

gypsy (Dec 20, 2006 8:32:28 PM)
yes red lol

REDHEADER (Dec 20, 2006 8:32:56 PM)
yes, they train us not the other way around, wierd lol

suziern (Dec 20, 2006 8:33:19 PM)
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BabyKayla (Dec 20, 2006 8:33:28 PM)
Wow Suzie that would be great to go to capital hill.............we should talk..........my mom used to do a lot of advocacy work in Washington........maybe she'd want to go too

REDHEADER (Dec 20, 2006 8:33:29 PM)
Ebony is getting better tho

gypsy (Dec 20, 2006 8:33:37 PM)
that good red

gypsy (Dec 20, 2006 8:33:51 PM)
wish kitty would lean she has no idea

suziern (Dec 20, 2006 8:33:58 PM)
Well I will go by myself if I can't get anyone else, but was hoping someone could go with me

REDHEADER (Dec 20, 2006 8:34:00 PM)
she is sarting to learn what not to walk/lay on

BabyKayla (Dec 20, 2006 8:34:10 PM)
Suzie, how old is BillyDean again?

suziern (Dec 20, 2006 8:34:10 PM)
I am just diving in and doing the best I can and trying to learn

gypsy (Dec 20, 2006 8:34:14 PM)
guess it has something to do with being a stray for so long

suziern (Dec 20, 2006 8:34:17 PM)
12

suziern (Dec 20, 2006 8:34:23 PM)
but he has a learning disability

BabyKayla (Dec 20, 2006 8:34:32 PM)
when did he start with BiPap

REDHEADER (Dec 20, 2006 8:34:37 PM)
yeah. Got mine from Lollypop Farm

suziern (Dec 20, 2006 8:34:44 PM)
he really is extremely high functioning and often can do many things the doctors think he won't be able to do

suziern (Dec 20, 2006 8:34:56 PM)
so I keep teaching him everything anyway

gypsy (Dec 20, 2006 8:35:02 PM)
that good suzi

REDHEADER (Dec 20, 2006 8:35:06 PM)
doctors...guesswork in a white coat

suziern (Dec 20, 2006 8:35:16 PM)
last july

REDHEADER (Dec 20, 2006 8:35:17 PM)
just kidding ;)

bette (Dec 20, 2006 8:35:33 PM)
Food definiton Red

REDHEADER (Dec 20, 2006 8:35:41 PM)
thx

suziern (Dec 20, 2006 8:35:42 PM)
I know

elliebedelia (Dec 20, 2006 8:35:49 PM)
good for you suzi he requires lots of attention I`m sure and we can suprise the doctors

bette (Dec 20, 2006 8:35:50 PM)
Try good definition Red

suziern (Dec 20, 2006 8:35:55 PM)
he is doing so much better tolerating that bipap

suziern (Dec 20, 2006 8:36:35 PM)
he has two older siblings on bipap as well and they are trying but also struggling with it

suziern (Dec 20, 2006 8:36:40 PM)
they are 21 and 16

REDHEADER (Dec 20, 2006 8:37:07 PM)
got a question. When u wink, or close one eye, does your other eye stay looking forward or does it move?

suziern (Dec 20, 2006 8:37:07 PM)
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REDHEADER (Dec 20, 2006 8:37:16 PM)
that was to anyone

elliebedelia (Dec 20, 2006 8:37:17 PM)
i couldn`t go this time suzi but maybe another time i could meet up with you

bette (Dec 20, 2006 8:37:28 PM)
I can't wink.

elliebedelia (Dec 20, 2006 8:37:52 PM)
i just practiced red and mine will stay still

REDHEADER (Dec 20, 2006 8:38:05 PM)
I wink my left eye and my right stays foward, i wink my right and my left moves right

bette (Dec 20, 2006 8:38:16 PM)
If I close one eye the other one seems to stay looking forward.

REDHEADER (Dec 20, 2006 8:38:40 PM)
;)

suziern (Dec 20, 2006 8:38:41 PM)
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bette (Dec 20, 2006 8:38:51 PM)
Red, you just have a roving eye.

elliebedelia (Dec 20, 2006 8:38:52 PM)
must be a special gift you have red

suziern (Dec 20, 2006 8:39:08 PM)
Lisa, would your mom be interested you think?

REDHEADER (Dec 20, 2006 8:39:12 PM)
of course I have a roving eye, I am a bachelor

gypsy (Dec 20, 2006 8:39:19 PM)
lol red

Wendy2 (Dec 20, 2006 8:39:22 PM)
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REDHEADER (Dec 20, 2006 8:39:31 PM)
hi wendy

elliebedelia (Dec 20, 2006 8:39:36 PM)
hi wendy

Wendy2 (Dec 20, 2006 8:39:45 PM)
Had a heck of a time getting on

bette (Dec 20, 2006 8:39:49 PM)
Hi Wendy. Are you drying out in Portland?

suziern (Dec 20, 2006 8:39:51 PM)
me too Wendy

suziern (Dec 20, 2006 8:40:14 PM)
I have the most updated version of JAVA so I am not sure what else I can do here

BabyKayla (Dec 20, 2006 8:40:22 PM)
I'd have to ask her Suzie

REDHEADER (Dec 20, 2006 8:40:27 PM)
pray?

elliebedelia (Dec 20, 2006 8:40:37 PM)
how are your savings adding up red ? are you still taking that trip/

suziern (Dec 20, 2006 8:40:50 PM)
Well they told me I can let them know about BillyDean coming as late as January

gypsy (Dec 20, 2006 8:40:55 PM)
hi wnedy

Wendy2 (Dec 20, 2006 8:40:57 PM)
We had a storm today dry tomorrow and another strom heading in for the weekend

REDHEADER (Dec 20, 2006 8:40:59 PM)
nope got cancelled so I used the money for Christmas shopping

suziern (Dec 20, 2006 8:41:14 PM)
I will probably bring him and have my daughter do something with him while I am in the sessions this year

BabyKayla (Dec 20, 2006 8:41:29 PM)
we go back to DC a couple of times a year

elliebedelia (Dec 20, 2006 8:41:40 PM)
must be it wasn`t meant to be

BabyKayla (Dec 20, 2006 8:41:40 PM)
I used to live there and Jeff's family is still there

suziern (Dec 20, 2006 8:41:41 PM)
Children as young as 5 can go into Congress and advocate for MD

bette (Dec 20, 2006 8:41:48 PM)
Does your daughter live in the DC area?

REDHEADER (Dec 20, 2006 8:41:55 PM)
perhaps

REDHEADER (Dec 20, 2006 8:42:24 PM)
of course since I am home u can come visit lol

elliebedelia (Dec 20, 2006 8:42:34 PM)
ray is ann`s stoma for her feeding tube?

suziern (Dec 20, 2006 8:42:34 PM)
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BabyKayla (Dec 20, 2006 8:43:00 PM)
Suzie I would really love to go..........let's talk after this chat and see if it is a reality for us to go.......

PaRay (Dec 20, 2006 8:43:15 PM)
Ellie... She is on a ventilator at night and has a trach.

elliebedelia (Dec 20, 2006 8:43:16 PM)
i told you i will come visit sometime i will have to checkout the bus route

REDHEADER (Dec 20, 2006 8:43:30 PM)
if anyone is using AIM, my screen name is Myotonicman

REDHEADER (Dec 20, 2006 8:43:37 PM)
just fyi

Wendy2 (Dec 20, 2006 8:43:54 PM)
I went to the bank today. The handicapped button wasn't working on the door. I got my leg crushed between the door and scooter trying to get through the door. Hurts like the dickens

REDHEADER (Dec 20, 2006 8:44:03 PM)
ow

suziern (Dec 20, 2006 8:44:05 PM)
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Wendy2 (Dec 20, 2006 8:44:06 PM)
Hope I can walk tomorrow

BabyKayla (Dec 20, 2006 8:44:11 PM)
Suzie, did BillyDean ever use a walker or wheetchair?

REDHEADER (Dec 20, 2006 8:44:49 PM)
it frustrates me when people who are obviously not mobility impaired use the handicapped button

gypsy (Dec 20, 2006 8:44:50 PM)
oh no sorry wendy :(

BabyKayla (Dec 20, 2006 8:45:06 PM)
You were signed off for my last message..............I would love to go........let's talk after the chat and see if it's really possible to do it

REDHEADER (Dec 20, 2006 8:45:26 PM)
saw that twice today

bette (Dec 20, 2006 8:45:34 PM)
Wendy, will the bank pay for any medical bills you may incurre? It is their fault that the button as out of order.

suziern (Dec 20, 2006 8:46:17 PM)
No he does not use a wheelchair or walker, never did, but the doctors have advised me to get a wheelchair and keep it in my trunk for long distances or all day walking for him.

REDHEADER (Dec 20, 2006 8:46:31 PM)
they are just too damn lazy to push the door open, when they are perfectly capable of doing it

Wendy2 (Dec 20, 2006 8:46:31 PM)
I think Iwill be OK. The bank mamager was really sorry. He called maintence right in front of me

barryc (Dec 20, 2006 8:46:38 PM)
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suziern (Dec 20, 2006 8:46:40 PM)
When I took him to Kings Island I pushed him around all day so he would not fatigue so much

REDHEADER (Dec 20, 2006 8:46:46 PM)
hi barry

elliebedelia (Dec 20, 2006 8:46:53 PM)
lisa that would be wonderful for all of us if you 2 can work it out. We all appreciate everyone that can go the Washington and help out cause

bette (Dec 20, 2006 8:46:56 PM)
We have a ataravel chair that we keep in the trunk. It works really well.

BabyKayla (Dec 20, 2006 8:46:57 PM)
at what age did you get the wheelchair

suziern (Dec 20, 2006 8:47:03 PM)
but his teachers say the opposite, they say to "work out" his hands, etc.

barryc (Dec 20, 2006 8:47:08 PM)
hi gys.... well well well, redheader! good to see you

gypsy (Dec 20, 2006 8:47:10 PM)
that a good idea suzi

suziern (Dec 20, 2006 8:47:10 PM)
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BabyKayla (Dec 20, 2006 8:47:26 PM)
I'm trying to plan for Kayla's needs and trying to line things up before she turns 3

gypsy (Dec 20, 2006 8:47:32 PM)
hi barry

REDHEADER (Dec 20, 2006 8:47:34 PM)
and good to see u too

barryc (Dec 20, 2006 8:47:40 PM)
hi ms aussie

Wendy2 (Dec 20, 2006 8:47:42 PM)
I wish my scooter wasn't so heavy and could travel well

REDHEADER (Dec 20, 2006 8:48:07 PM)
barry, you are supposed to say g'day!

BabyKayla (Dec 20, 2006 8:48:08 PM)
we looked at walkers and wheelchairs today but I am still not sure exactly what she might need

gypsy (Dec 20, 2006 8:48:09 PM)
can't get the one i have in my car either wendy

barryc (Dec 20, 2006 8:48:15 PM)
wendy2...did you get a chance to ask you support group about visiting with us, when we are in Portland?

gypsy (Dec 20, 2006 8:48:23 PM)
lol red

suziern (Dec 20, 2006 8:48:40 PM)
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REDHEADER (Dec 20, 2006 8:48:48 PM)
G'day mate! or in your case G'day Sheila!

Wendy2 (Dec 20, 2006 8:48:52 PM)
Babykayla you kind find some good used stuff on Craigs List. that is where I found my scooter

barryc (Dec 20, 2006 8:48:56 PM)
terry gets his new Sienna Van tomorrow...OK!

suziern (Dec 20, 2006 8:49:00 PM)
Am I back again?

gypsy (Dec 20, 2006 8:49:05 PM)
my brother is going to try and bring mum home xmas day hope it goes well

Wendy2 (Dec 20, 2006 8:49:06 PM)
I had it for 2 years not a problem

gypsy (Dec 20, 2006 8:49:09 PM)
wb suzi

bette (Dec 20, 2006 8:49:13 PM)
Hi Barry. Thanks for the update. When are you planning on being in L.A.? We will try to make the conference then.

suziern (Dec 20, 2006 8:49:18 PM)
Gee!

BabyKayla (Dec 20, 2006 8:49:24 PM)
we looked at walkers and wheetchairs today but I'm not sure exactly what she might need

elliebedelia (Dec 20, 2006 8:49:25 PM)
hi barry How are you and Julie and Terry ?

BabyKayla (Dec 20, 2006 8:49:45 PM)
Thanks Wendy........I'll take a look once I figure out what she needs

gypsy (Dec 20, 2006 8:49:50 PM)
wondering it i should look at gettign a folding w/c that i can mange to lift myelf as walking is getting realay hard

suziern (Dec 20, 2006 8:49:50 PM)
Has Robyn been on any while I have been thrown out?

barryc (Dec 20, 2006 8:49:56 PM)
uhm.. bette I will have to check dates for LA gig.... just email me... will look it up...and I am sure Alice G will let people know.

BabyKayla (Dec 20, 2006 8:50:04 PM)
actually if I get them before she turns 3 our Regional Center will pay for them

REDHEADER (Dec 20, 2006 8:50:07 PM)
as i mentioned earlier suziern, my doctor has me on Quinine Sulfate, and it helps keep my hands from cramping

gypsy (Dec 20, 2006 8:50:15 PM)
how is julie barry ?

REDHEADER (Dec 20, 2006 8:50:23 PM)
you got dc, so u might have missed that

Wendy2 (Dec 20, 2006 8:50:29 PM)
I talked to my Mom when she sees Arica the will talk about Next week I think

suziern (Dec 20, 2006 8:50:29 PM)
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REDHEADER (Dec 20, 2006 8:50:49 PM)
poor suzi

elliebedelia (Dec 20, 2006 8:50:53 PM)
suzi is having a hard time tonight

REDHEADER (Dec 20, 2006 8:51:03 PM)
multiple dc

barryc (Dec 20, 2006 8:51:07 PM)
julie is better.. pacemaker was checked by doc...working well... she is still weak, and sometimes here left arm hurts.... well, that is just par for the course!

gypsy (Dec 20, 2006 8:51:09 PM)
yes she sure is :(

gypsy (Dec 20, 2006 8:51:26 PM)
glad she is doing better

barryc (Dec 20, 2006 8:51:36 PM)
thanx ms aussie

gypsy (Dec 20, 2006 8:51:49 PM)
say hi for me barry :)

BabyKayla (Dec 20, 2006 8:51:55 PM)
have any of you experienced a low thryoid reading.............IGF-1 specifically

barryc (Dec 20, 2006 8:52:02 PM)
ellie...what's with suzi?

BabyKayla (Dec 20, 2006 8:52:12 PM)
Kayla had a low reading today

elliebedelia (Dec 20, 2006 8:52:18 PM)
she keeps getting booted barry

REDHEADER (Dec 20, 2006 8:52:33 PM)
yeah, a lot of dc

Wendy2 (Dec 20, 2006 8:52:34 PM)
I take thyroid medicine

Wendy2 (Dec 20, 2006 8:52:47 PM)
Synthoird

barryc (Dec 20, 2006 8:52:48 PM)
oh... ding bat digitchat... booting is reason julie won't go on chat any more.

elliebedelia (Dec 20, 2006 8:52:54 PM)
they do test my thyroid every yr lisa and so far it has always been notmal

Wendy2 (Dec 20, 2006 8:53:28 PM)
MY Mom has thyroid problems too

elliebedelia (Dec 20, 2006 8:53:37 PM)
well tell her we all say hi and we are thinking of her

REDHEADER (Dec 20, 2006 8:53:41 PM)
I am not seeing Dr.Thornton until march

suziern (Dec 20, 2006 8:54:02 PM)
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barryc (Dec 20, 2006 8:54:13 PM)
red... ask doc Thornton if he enjoyed Terry's book... he bought a copy recently...

Wendy2 (Dec 20, 2006 8:54:16 PM)
Welcomeback Suz

REDHEADER (Dec 20, 2006 8:54:21 PM)
ok

bette (Dec 20, 2006 8:54:27 PM)
Suzi, you do haae tenancity.

barryc (Dec 20, 2006 8:54:56 PM)
bette..how are you feeling... you also have had your challenges...

suziern (Dec 20, 2006 8:54:58 PM)
I guess, I am getting frustrated

BabyKayla (Dec 20, 2006 8:55:00 PM)
I had a thyroid tumor removed a few years ago but never needed to use any medication

suziern (Dec 20, 2006 8:55:10 PM)
I am learning patience from BillyDean.....

elliebedelia (Dec 20, 2006 8:55:10 PM)
my cousin was just tested and she diffinately has mmd but they refused to do the dna for the number of repeats the dr. told her it was expensive and doesn`t matter what the repeats are if she has it she has it

barryc (Dec 20, 2006 8:55:26 PM)
go go BillyDean

BabyKayla (Dec 20, 2006 8:55:38 PM)
Kayla's low level usually means that there is failure to thrive and short stature but Kayla is anything but..............??? who knows

REDHEADER (Dec 20, 2006 8:56:19 PM)
well, gang I got to go. May you all have a very Happy Holiday and a Happy and Healthy New Year for us all! I love you guys

gypsy (Dec 20, 2006 8:56:19 PM)
think i need lessoin suzi

barryc (Dec 20, 2006 8:56:23 PM)
Lisa, you and your husband, can add zest to anyone's life... babyK is so fortunate to be part of your loving family

Wendy2 (Dec 20, 2006 8:56:30 PM)
I take the lowest dose of Meds available Baby she might need that

BabyKayla (Dec 20, 2006 8:56:30 PM)
you too Red

gypsy (Dec 20, 2006 8:56:36 PM)
bye red tc happy holdiays to you too :)

bette (Dec 20, 2006 8:56:38 PM)
Barry, I'm doing pretty well. See the orthopeidst on Friday but I've been walking on my own for the last 2 weeks.

REDHEADER (Dec 20, 2006 8:56:39 PM)
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suziern (Dec 20, 2006 8:56:47 PM)
so redheader, does it help you to force handwrite even if it causes your hands to cramp? should Iet them make him write more

BabyKayla (Dec 20, 2006 8:56:55 PM)
aww shucks Barry

suziern (Dec 20, 2006 8:56:56 PM)
they said that helps, I have not read that helps anyplace

suziern (Dec 20, 2006 8:56:56 PM)
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BabyKayla (Dec 20, 2006 8:57:06 PM)
.............tear in my eye :)

bette (Dec 20, 2006 8:57:07 PM)
I still have a sore throat and feel tired all the time. Other than that, I am fine.

barryc (Dec 20, 2006 8:57:22 PM)
glad to hear that...bette.... julie and I are always thinking of you and wishing you well...

gypsy (Dec 20, 2006 8:57:22 PM)
i don't have any major hand problesm or mmd suzi but i do have a bit of troulbe writting hteses days

elliebedelia (Dec 20, 2006 8:57:53 PM)
bette so sorry to hear you have been sick and am glad to know you are getting better, I know its no fun having setbacks

Wendy2 (Dec 20, 2006 8:57:59 PM)
Well I had better go time fo Spaghetti. Happy holidays everyonr

barryc (Dec 20, 2006 8:58:10 PM)
Lisa,,,, you there ever is a MS Mommy, I nominate YOU

BabyKayla (Dec 20, 2006 8:58:11 PM)
sorry to hear you are sick Bette

gypsy (Dec 20, 2006 8:58:14 PM)
night wendy tc you too

gypsy (Dec 20, 2006 8:58:26 PM)
hope it's better soon bette

BabyKayla (Dec 20, 2006 8:58:34 PM)
night wendy

elliebedelia (Dec 20, 2006 8:58:46 PM)
good night from NH

Wendy2 (Dec 20, 2006 8:58:46 PM)
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barryc (Dec 20, 2006 8:58:58 PM)
good night ms NH

barryc (Dec 20, 2006 8:59:22 PM)
what happened to Marcia tonight? you know the Vegas gambling addict

elliebedelia (Dec 20, 2006 8:59:41 PM)
Everyone have a Safe Holiday Season !

bette (Dec 20, 2006 8:59:50 PM)
That you all for the good wishes. I just blame everything on the MMD.

barryc (Dec 20, 2006 8:59:54 PM)
you too elllie

BabyKayla (Dec 20, 2006 8:59:57 PM)
Kayla learned the song, If you're happy and you know it clap your hands...........this week

barryc (Dec 20, 2006 9:00:13 PM)
omen babyK...very wise words...

bette (Dec 20, 2006 9:00:13 PM)
Marcia is doing a errand with her Mom. She'll be back on Wednesday.

gypsy (Dec 20, 2006 9:00:19 PM)
you too ellie

gypsy (Dec 20, 2006 9:00:33 PM)
great lisa :)

bette (Dec 20, 2006 9:00:46 PM)
Barry are you gues doing anything for Hanukkah?

barryc (Dec 20, 2006 9:00:46 PM)
marcia is doing an errand...uhm... are you sure she isn't gambling on the sly?

gypsy (Dec 20, 2006 9:00:47 PM)
looking forward to seeing my neice at xmas

BabyKayla (Dec 20, 2006 9:00:53 PM)
she claps her hands, stomps her feet and raises her hand for HOORAY

BabyKayla (Dec 20, 2006 9:00:56 PM)
hee hee

bette (Dec 20, 2006 9:01:08 PM)
She leaves Friday for Vegas.

BabyKayla (Dec 20, 2006 9:01:14 PM)
I'm such a mom......that is so exciting as a mom ya know

barryc (Dec 20, 2006 9:01:25 PM)
well bette, since julie is still so weak after pacemaker and defribulator surgery, we just hung out at home... thanx for asking.

elliebedelia (Dec 20, 2006 9:02:13 PM)
well lisa that is so exciting and she is special My son and daught-in-law are expecting twin boys in April but they will arrive earlier I`m sure

BabyKayla (Dec 20, 2006 9:02:25 PM)
Barry, how is Julie feeling? Tell her I send my regards

bette (Dec 20, 2006 9:02:26 PM)
I'm lighting candles but no doing anything else. We did have a Hanukah pot luck with our Marriag Encount group. Good food, nice people.

BabyKayla (Dec 20, 2006 9:03:06 PM)
Ellie, that is so great

barryc (Dec 20, 2006 9:03:26 PM)
I do light the candles and julie says the prayer.... she can no longer light the candles... weak hands...but we keep on the tradition, Bette.

bette (Dec 20, 2006 9:03:44 PM)
Ellie, twin boys, that should be a hnadful. I'm sure you'll enjoy every moment you have with them.

BabyKayla (Dec 20, 2006 9:04:34 PM)
I have always wanted twins (both my mom and dad are twins) but now I'm not sure that I could handle it

elliebedelia (Dec 20, 2006 9:04:42 PM)
yes he will be deployed for 6 monthes soon after they are born so she and the babys will mave here with her parents and they are just 10 minutes from me

barryc (Dec 20, 2006 9:05:19 PM)
I do wish that peace will come on earth... the christmas songs and prayers and the chanakuh prayers and I think about every religion I know ... are all about reaching for peace... we seem so far from it as this year draws to a close.

elliebedelia (Dec 20, 2006 9:05:34 PM)
so they will have all us grandparents to spoil them

BabyKayla (Dec 20, 2006 9:06:05 PM)
wow, ellie, that must be hard to leave with new babies

BabyKayla (Dec 20, 2006 9:06:11 PM)
where will he be deployed

bette (Dec 20, 2006 9:06:12 PM)
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gypsy (Dec 20, 2006 9:06:30 PM)
unfortunalty we do barry it's a scarry world these days

elliebedelia (Dec 20, 2006 9:06:40 PM)
yes barry I say Amen to that. We pray for pease and I `m sure we are all in union together in these prayers

barryc (Dec 20, 2006 9:07:35 PM)
Amen ... just some sanity in the world we would a move in the right direction. Whatever happened to kindness and just being respectul of people of all kinds?

BabyKayla (Dec 20, 2006 9:08:10 PM)
I'm with you on that one

barryc (Dec 20, 2006 9:08:13 PM)
gypsy,,,, are you enjoying summer down there?

elliebedelia (Dec 20, 2006 9:08:21 PM)
well service men never know but this is supose to be his last big deployment. He is on the USS Philadelphis well I was gonna say more but so much is secret

gypsy (Dec 20, 2006 9:09:03 PM)
no not one bit barry been hot and some very bad fires already :( so dry and doesn't look like it is ever going to rain

BabyKayla (Dec 20, 2006 9:09:36 PM)
Barry, can you give Julie a big hug from me and Kayla

BabyKayla (Dec 20, 2006 9:10:05 PM)
I mean........Kayla and me

barryc (Dec 20, 2006 9:10:08 PM)
I will do that Lisa...your kindness is appreciated...

BabyKayla (Dec 20, 2006 9:10:09 PM)
and Jeff of course

barryc (Dec 20, 2006 9:10:28 PM)
yes, and Jeff, the big guy, too.

barryc (Dec 20, 2006 9:11:12 PM)
time to sign off... have a good night to all!

barryc (Dec 20, 2006 9:11:13 PM)
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elliebedelia (Dec 20, 2006 9:11:29 PM)
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gypsy (Dec 20, 2006 9:11:48 PM)
night all tc happy holidays

BabyKayla (Dec 20, 2006 9:12:11 PM)
night Gypsy......happy holidays to you and your family

BabyKayla (Dec 20, 2006 9:12:32 PM)
well Ray, it looks like it's you and i

PaRay (Dec 20, 2006 9:14:09 PM)
Oh no. I was getting ready for my nap.

PaRay (Dec 20, 2006 9:15:43 PM)
I hope that you guys have the biggest Christmas ever.

gypsy (Dec 20, 2006 9:16:29 PM)
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PaRay (Dec 20, 2006 9:17:26 PM)
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