Parents of Young Adults with DMD
sunney (Dec 26, 2007 9:06:46 PM)
sunney (Dec 26, 2007 9:07:07 PM)
all by myself....
sunney (Dec 26, 2007 9:07:18 PM)
don't wanna be all by myself
sunney (Dec 26, 2007 9:08:06 PM)
I hope everyone had a very merry Christmas!
sunney (Dec 26, 2007 9:10:08 PM)
Gotta go, cooking dinner here but wanted to say all is well with Nick. Hopefully I'll catch up with everyone next week. Happy New Year!
sunney (Dec 26, 2007 9:10:13 PM)
(This user has left DigiChat)
anna (Dec 26, 2007 9:16:54 PM)
(This user has entered Parents of Young Adults with DMD)
liisau (Dec 26, 2007 9:22:55 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Dec 26, 2007 9:23:07 PM)
Hi Liisa
liisau (Dec 26, 2007 9:23:10 PM)
hi anna
liisau (Dec 26, 2007 9:23:15 PM)
just the two of us tonight?
liisau (Dec 26, 2007 9:23:26 PM)
merry christmas
anna (Dec 26, 2007 9:23:27 PM)
so far, and I just got here
anna (Dec 26, 2007 9:23:39 PM)
merry christmas one day late to you also
liisau (Dec 26, 2007 9:23:43 PM)
lol
liisau (Dec 26, 2007 9:23:52 PM)
how's life in seattle
liisau (Dec 26, 2007 9:23:54 PM)
area
anna (Dec 26, 2007 9:23:54 PM)
how was it for your family?
liisau (Dec 26, 2007 9:24:01 PM)
it was quiet and fun
anna (Dec 26, 2007 9:24:08 PM)
it snowed on Christmas, but didn't stay long
liisau (Dec 26, 2007 9:24:12 PM)
I heard
liisau (Dec 26, 2007 9:24:24 PM)
inlaws mentioned it was pretty
anna (Dec 26, 2007 9:24:26 PM)
nice to look at and not have to drive in
liisau (Dec 26, 2007 9:24:30 PM)
lol
anna (Dec 26, 2007 9:24:46 PM)
we just had 4 or us
anna (Dec 26, 2007 9:24:51 PM)
of us
anna (Dec 26, 2007 9:25:10 PM)
now R is back at work
liisau (Dec 26, 2007 9:25:14 PM)
I recall hearing talk about R and hubby
liisau (Dec 26, 2007 9:25:21 PM)
4th?
anna (Dec 26, 2007 9:25:25 PM)
yes, both have new jobs
liisau (Dec 26, 2007 9:25:29 PM)
oh yeah!
anna (Dec 26, 2007 9:25:57 PM)
I went home to Grays Harbor to work on sat and sun and saw some of the wind damage
liisau (Dec 26, 2007 9:26:31 PM)
oh boy, a lot?
anna (Dec 26, 2007 9:26:52 PM)
some very large trees snapped like twigs--and some flooding
liisau (Dec 26, 2007 9:27:05 PM)
oh boy
liisau (Dec 26, 2007 9:27:46 PM)
any damage to your place
anna (Dec 26, 2007 9:28:25 PM)
hubby got a ham at work even tho he had only worked 2 days. no. we were fortunate our home was fine as we live on the edge of a hill covered with huge trees
liisau (Dec 26, 2007 9:28:45 PM)
double good.
anna (Dec 26, 2007 9:28:56 PM)
we do live near a river but it never reached our home
liisau (Dec 26, 2007 9:29:15 PM)
oh thank goodness
anna (Dec 26, 2007 9:29:18 PM)
just hubby had no power for a few days, but we have a woodstove
anna (Dec 26, 2007 9:29:31 PM)
it sounds worse in other parts of the country
anna (Dec 26, 2007 9:30:10 PM)
my problem right now is still trying to find an aide to come give R lunch at work
anna (Dec 26, 2007 9:31:03 PM)
I am going to try Craig's List, but want to weed out any whackos by telling them they have to get state certified first by taking state-given caretaker class
anna (Dec 26, 2007 9:31:30 PM)
then they have to get checked out for criminal activity, etc.
liisau (Dec 26, 2007 9:31:37 PM)
it's a good idea
liisau (Dec 26, 2007 9:31:45 PM)
how do you get them checked out?
liisau (Dec 26, 2007 9:32:04 PM)
sorry for delayed responses, multi-tasking
anna (Dec 26, 2007 9:32:07 PM)
our social worker will tell them how I guess
liisau (Dec 26, 2007 9:32:13 PM)
ah
liisau (Dec 26, 2007 9:32:23 PM)
you have a whole team eh?
anna (Dec 26, 2007 9:32:28 PM)
yes, I am trying to also multi-task and am not good at it
liisau (Dec 26, 2007 9:32:39 PM)
lol, me neither!
anna (Dec 26, 2007 9:33:11 PM)
anything you wish to discuss now?
liisau (Dec 26, 2007 9:33:33 PM)
i know it's been a long time since things started with R, I don't get the process
liisau (Dec 26, 2007 9:33:58 PM)
When will we get the rest of the "team" invovled
liisau (Dec 26, 2007 9:34:32 PM)
does it come with the issues as they arise
anna (Dec 26, 2007 9:34:45 PM)
start with MDA clinic with PT too
liisau (Dec 26, 2007 9:35:34 PM)
we had the clinic, we do home PT
anna (Dec 26, 2007 9:35:47 PM)
about age 11, if no problems noted earlier, see cardiologist and pulmonologist for baselines
liisau (Dec 26, 2007 9:35:51 PM)
but nothing else is needed right now
liisau (Dec 26, 2007 9:36:02 PM)
baselines now?
anna (Dec 26, 2007 9:36:30 PM)
about age 11
anna (Dec 26, 2007 9:36:54 PM)
swimming is good
liisau (Dec 26, 2007 9:37:28 PM)
there was a family I came across who's son had his baselines at 3
liisau (Dec 26, 2007 9:37:33 PM)
and he already have problems
liisau (Dec 26, 2007 9:37:51 PM)
though not noticeable
anna (Dec 26, 2007 9:37:59 PM)
well, that sounds pre-mature, but probably different docs have different ideas (as usual)
liisau (Dec 26, 2007 9:38:06 PM)
like the swimming
liisau (Dec 26, 2007 9:38:38 PM)
that's the problem... no standard protocol
anna (Dec 26, 2007 9:38:53 PM)
what problems was the 3 year old having?
liisau (Dec 26, 2007 9:39:50 PM)
they were told it's part of the normal beginnings that clinic does
anna (Dec 26, 2007 9:41:10 PM)
well, here is an article that wants respiratory baseline done earlier: http://www.mdausa.org/research/040824respcare.html
liisau (Dec 26, 2007 9:41:26 PM)
big smile.. thanks
liisau (Dec 26, 2007 9:41:39 PM)
I guess I feel like I should be doing so much more for him
anna (Dec 26, 2007 9:41:49 PM)
R had it about age 12 or 13
liisau (Dec 26, 2007 9:42:06 PM)
he was asked to participate in a training video
liisau (Dec 26, 2007 9:42:11 PM)
so that's cool
anna (Dec 26, 2007 9:42:31 PM)
there is not much you can do besides keeping your son as flexible as you can with exercises, swimming, maybe yoga
liisau (Dec 26, 2007 9:42:32 PM)
we sent donation information to all our friends and family and asked them to spread the word
liisau (Dec 26, 2007 9:42:57 PM)
some notes I saw said don't let them do stairs, your thoughts?
anna (Dec 26, 2007 9:43:19 PM)
did they say that to prevent falling accidents?
anna (Dec 26, 2007 9:43:44 PM)
I let my son do stairs as long as he wanted to
anna (Dec 26, 2007 9:44:12 PM)
remember, we didn't find out until son was 7 and he stopped walking by age 9
liisau (Dec 26, 2007 9:45:45 PM)
nope, some speculation about how much muscle breakdown there is with stairs
anna (Dec 26, 2007 9:46:04 PM)
everyone thought we should "build up" our son's muscles, not understanding that it cannot be done. but I don't think exercise is bad for them or breaks down the muscles sooner
liisau (Dec 26, 2007 9:46:44 PM)
I figure he would just ask for help when he wants it
liisau (Dec 26, 2007 9:47:05 PM)
ok...I'm being silly here... I just want to do much more
anna (Dec 26, 2007 9:47:07 PM)
that is what R did--
anna (Dec 26, 2007 9:47:27 PM)
yes, it is so frustrating not to be able to do MORE, isn't it?
liisau (Dec 26, 2007 9:47:37 PM)
yuppers...
anna (Dec 26, 2007 9:48:34 PM)
looking back, the only thing I would do different is work more on keeping his arms flexible as possible while they contract no matter what you do anyway
anna (Dec 26, 2007 9:48:54 PM)
but drs emphasized legs and not arms
liisau (Dec 26, 2007 9:49:09 PM)
you know I was just thinking about that the weekend
anna (Dec 26, 2007 9:50:00 PM)
once they are in the wc concentrate on the arms
anna (Dec 26, 2007 9:50:46 PM)
and, teaching keyboarding early is good as it might be hard for them to write by about age 10-12
liisau (Dec 26, 2007 9:51:13 PM)
they get weaker their so early?
anna (Dec 26, 2007 9:51:35 PM)
each child is different--those are generalities based on my son
liisau (Dec 26, 2007 9:52:02 PM)
understand
anna (Dec 26, 2007 9:52:33 PM)
I HATED to see my son stop drawing
liisau (Dec 26, 2007 9:52:49 PM)
oh I bet
anna (Dec 26, 2007 9:52:57 PM)
later he took CAD which is sort of drawing I guess
liisau (Dec 26, 2007 9:53:16 PM)
well, it sounds like the keyboarding helped him get this job!
liisau (Dec 26, 2007 9:53:58 PM)
are you taking care of his lunches?
anna (Dec 26, 2007 9:54:00 PM)
well, a BS in CS helped lol
liisau (Dec 26, 2007 9:54:13 PM)
his story is so wonderful
anna (Dec 26, 2007 9:54:16 PM)
yes, we "do lunch"
liisau (Dec 26, 2007 9:54:21 PM)
smile
anna (Dec 26, 2007 9:54:54 PM)
Ensure and left-overs usually, although today we went to cafeteria in next building over
liisau (Dec 26, 2007 9:55:12 PM)
how is he integrating with his co-workers?
anna (Dec 26, 2007 9:55:17 PM)
sometimes I cannot get him away from his desk
liisau (Dec 26, 2007 9:55:27 PM)
that's me every day at work
anna (Dec 26, 2007 9:55:33 PM)
we had lunch with 2 or his co-workers today
liisau (Dec 26, 2007 9:55:57 PM)
have you two considered writing about his story and success?
anna (Dec 26, 2007 9:55:58 PM)
one guy just left and there will be a new hire soon--hope it is a woman to shake up the 6 man office
liisau (Dec 26, 2007 9:56:09 PM)
lol, and they always do!
anna (Dec 26, 2007 9:56:21 PM)
MDA office wants me to write it up
liisau (Dec 26, 2007 9:56:55 PM)
I know of a couple of other parents that would love to hear this story
anna (Dec 26, 2007 9:56:56 PM)
did you read the other articles about my son?
liisau (Dec 26, 2007 9:57:07 PM)
nope, having checked
liisau (Dec 26, 2007 9:57:18 PM)
do you all have a website?
anna (Dec 26, 2007 9:57:34 PM)
no, but I can get links in just a moment
liisau (Dec 26, 2007 9:57:37 PM)
www.caringbridge.org/visit/ourconnor
anna (Dec 26, 2007 9:58:02 PM)
I will check that out!
liisau (Dec 26, 2007 9:58:13 PM)
thanks
twinglema (Dec 26, 2007 9:58:35 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Dec 26, 2007 9:58:38 PM)
http://www.mdausa.org/publications/Quest/q116letgo.html
liisau (Dec 26, 2007 9:58:39 PM)
are you with R tonight?
liisau (Dec 26, 2007 9:58:42 PM)
hi twinglema
anna (Dec 26, 2007 9:58:43 PM)
Hi Teingle
twinglema (Dec 26, 2007 9:58:55 PM)
hi! how was everyones xmas
liisau (Dec 26, 2007 9:59:01 PM)
good and you?
anna (Dec 26, 2007 9:59:10 PM)
http://www.kvnews.com/articles/2005/06/11/news/news01.txt
twinglema (Dec 26, 2007 9:59:12 PM)
very nice
anna (Dec 26, 2007 9:59:25 PM)
was just getting my "bragging" links to Liisa
twinglema (Dec 26, 2007 9:59:28 PM)
except for mom in laws memeory :(
twinglema (Dec 26, 2007 9:59:38 PM)
well, tats what moms are for
liisau (Dec 26, 2007 9:59:41 PM)
lol
anna (Dec 26, 2007 9:59:52 PM)
well, I can tell you stories about my mom at dinner that would curl your hair...
twinglema (Dec 26, 2007 9:59:54 PM)
she probably has alzheimers
liisau (Dec 26, 2007 9:59:58 PM)
we're still waiting for xmas box from my mom-in-law
twinglema (Dec 26, 2007 10:00:14 PM)
she thought she was at my house when we were really clear across town
liisau (Dec 26, 2007 10:00:21 PM)
oh boy
anna (Dec 26, 2007 10:00:41 PM)
mine suddenly forgot how to use her fork
liisau (Dec 26, 2007 10:00:51 PM)
oh, I do that all the time
liisau (Dec 26, 2007 10:00:54 PM)
lol
twinglema (Dec 26, 2007 10:00:54 PM)
did your mom give r his cane?
twinglema (Dec 26, 2007 10:01:00 PM)
oh my
twinglema (Dec 26, 2007 10:01:06 PM)
she have alzheimers?
anna (Dec 26, 2007 10:01:51 PM)
no, and I gave her a card to make out for R and she asked me how to sign it. I said "Grandma", but she just wrote from (her first name)
twinglema (Dec 26, 2007 10:02:04 PM)
sounds like my mom in law
anna (Dec 26, 2007 10:02:25 PM)
my mom just has "normal" dementia they say, but she still takes Aricept
twinglema (Dec 26, 2007 10:02:40 PM)
mine too-well shes more like my mom than my mom!
liisau (Dec 26, 2007 10:02:50 PM)
wow
twinglema (Dec 26, 2007 10:03:09 PM)
me, and 2 granddaughters are most involved with her
anna (Dec 26, 2007 10:03:21 PM)
I worked sat and sun and had the usual sad Christmas OD case
twinglema (Dec 26, 2007 10:03:33 PM)
one of hubbys sis's wants to put her in home and the bi polar sis thinks mom is fine
twinglema (Dec 26, 2007 10:03:43 PM)
oh anna i am sorry
twinglema (Dec 26, 2007 10:04:07 PM)
we had double homicide xmas eve
anna (Dec 26, 2007 10:04:35 PM)
the holidays cause depression to worsen for some
liisau (Dec 26, 2007 10:04:43 PM)
yup.
twinglema (Dec 26, 2007 10:04:43 PM)
i have heard that
liisau (Dec 26, 2007 10:04:57 PM)
I had my case of it christmas eve since my family is all out of town
anna (Dec 26, 2007 10:05:00 PM)
they expect a "magic" Christmas like they want to have and then are disappointed
liisau (Dec 26, 2007 10:05:08 PM)
but nothing THAT bad to kill
liisau (Dec 26, 2007 10:05:14 PM)
that's crazy
twinglema (Dec 26, 2007 10:05:35 PM)
if you keep jesus as the focus every xmas is magic
liisau (Dec 26, 2007 10:06:06 PM)
my oldest boy is 4 and he is just not getting the concept
anna (Dec 26, 2007 10:06:11 PM)
my daughter and granddaughter came for dinner last Thursday and then again to visit 5 minutes before I had to leave for "home" to go work
liisau (Dec 26, 2007 10:06:14 PM)
everything is about him getting the gifts
twinglema (Dec 26, 2007 10:06:39 PM)
at 4 my boys fought over where jesus went in the manger
liisau (Dec 26, 2007 10:06:46 PM)
LOL
twinglema (Dec 26, 2007 10:07:01 PM)
aww, rats anna
liisau (Dec 26, 2007 10:07:06 PM)
he said to me, "God is a girl? Right mommy?
anna (Dec 26, 2007 10:07:07 PM)
we de-emphasize gifts--I get small $10-20 gifts for each person
anna (Dec 26, 2007 10:07:28 PM)
why is God a girl??
twinglema (Dec 26, 2007 10:07:29 PM)
the kids get one big thing they want and little things
liisau (Dec 26, 2007 10:07:48 PM)
I have no idea how he picked that up?
liisau (Dec 26, 2007 10:08:30 PM)
sounds like a nice idea!
twinglema (Dec 26, 2007 10:08:30 PM)
they had more fun sledding yesterday at big get together
twinglema (Dec 26, 2007 10:08:56 PM)
and they give to each other and we always give toys to charity
anna (Dec 26, 2007 10:09:19 PM)
my mom insisted on being taken home Christmas right after dinner becasue it was snowing
twinglema (Dec 26, 2007 10:09:54 PM)
you got snow?
anna (Dec 26, 2007 10:10:06 PM)
then hubby left so R and I were all alone--but we didn't mind
anna (Dec 26, 2007 10:10:32 PM)
the snow melted off real fast, but looked pretty for a short time
twinglema (Dec 26, 2007 10:10:38 PM)
i bet
anna (Dec 26, 2007 10:11:06 PM)
I like to watch it if I am able to just stay home
anna (Dec 26, 2007 10:11:26 PM)
I didn't get my snow tires on this year...
twinglema (Dec 26, 2007 10:11:45 PM)
do ya need em there?
twinglema (Dec 26, 2007 10:11:58 PM)
we do all weather tires
anna (Dec 26, 2007 10:11:59 PM)
R likes to do do-nuts in the ice and snow, but gets cold real fast
twinglema (Dec 26, 2007 10:12:31 PM)
hubby does too
anna (Dec 26, 2007 10:12:34 PM)
we don't need them so much as when we were going over the mountain passes to get to school in Ellensburg
liisau (Dec 26, 2007 10:13:10 PM)
it's night night time for me ladies. Thanks!
twinglema (Dec 26, 2007 10:13:18 PM)
night lisa god bless
anna (Dec 26, 2007 10:13:21 PM)
Goodnight!
anna (Dec 26, 2007 10:13:25 PM)
ttyl
liisau (Dec 26, 2007 10:13:34 PM)
Merry Christmas. God Bless to you too! Have a safe new years!
twinglema (Dec 26, 2007 10:13:38 PM)
u 2
anna (Dec 26, 2007 10:13:51 PM)
ty
twinglema (Dec 26, 2007 10:14:02 PM)
well we have xtra kids as usual so i will be back tomorrow
anna (Dec 26, 2007 10:14:15 PM)
the chat will be ending soon so I have to let R get to WC Gang
anna (Dec 26, 2007 10:14:32 PM)
ok, Goodnight Kelley
twinglema (Dec 26, 2007 10:14:47 PM)
nite anna hope to see yuou tomorrow
twinglema (Dec 26, 2007 10:14:55 PM)
ty for the xmas letter
twinglema (Dec 26, 2007 10:15:04 PM)
e-mail
anna (Dec 26, 2007 10:15:11 PM)
depends on traffic! yw, sent it to everyone in my address book
liisau (Dec 26, 2007 10:15:25 PM)
(This user has left DigiChat)
twinglema (Dec 26, 2007 10:15:30 PM)
good luck!
twinglema (Dec 26, 2007 10:15:35 PM)
(This user has left DigiChat)
anna (Dec 26, 2007 10:15:43 PM)
Goodnight
anna (Dec 26, 2007 10:15:49 PM)
(This user has left DigiChat)