DMD Parent Chat
momma (Oct 7, 2008 7:51:18 PM)
anna (Oct 7, 2008 7:53:25 PM)
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momma (Oct 7, 2008 7:53:56 PM)
hi anna
anna (Oct 7, 2008 7:54:00 PM)
Hi
anna (Oct 7, 2008 7:54:08 PM)
well, we survived
momma (Oct 7, 2008 7:54:15 PM)
yeah !!!
momma (Oct 7, 2008 7:54:23 PM)
is he doing ok now
anna (Oct 7, 2008 7:54:25 PM)
R was back at work Monday
momma (Oct 7, 2008 7:54:35 PM)
i see
anna (Oct 7, 2008 7:54:37 PM)
we vomited all night Thursday
momma (Oct 7, 2008 7:54:44 PM)
oh no
anna (Oct 7, 2008 7:54:49 PM)
my hubby stayed up all night with him
anna (Oct 7, 2008 7:55:09 PM)
and diarhhea of course--like a 24 hour bug
momma (Oct 7, 2008 7:55:11 PM)
at leats ya had some help
momma (Oct 7, 2008 7:55:58 PM)
kent has vomited fro probably 2 yrs
anna (Oct 7, 2008 7:56:13 PM)
it was hard with the aspirating in the mix, but the vomiting was so predictable that he could use the cough assist inbetween
anna (Oct 7, 2008 7:56:24 PM)
has not?
momma (Oct 7, 2008 7:56:33 PM)
right
anna (Oct 7, 2008 7:56:57 PM)
R is very healthy usually--hasn't missed any work until last month
momma (Oct 7, 2008 7:57:07 PM)
yea
momma (Oct 7, 2008 7:57:45 PM)
how is the feeding going ?
anna (Oct 7, 2008 7:57:50 PM)
I don't see us ever getting tube feeding up to 80mls/hr
momma (Oct 7, 2008 7:58:10 PM)
kent only does 60
anna (Oct 7, 2008 7:58:39 PM)
for how many hours?
momma (Oct 7, 2008 7:59:22 PM)
he only get 250 nutrin 250 water but it goes 8-10 hrs
matts-mom2002 (Oct 7, 2008 7:59:33 PM)
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momma (Oct 7, 2008 7:59:41 PM)
hi
anna (Oct 7, 2008 7:59:43 PM)
we are "supposed" to do 80mls/hr for 10 hours
matts-mom2002 (Oct 7, 2008 7:59:44 PM)
greetings
anna (Oct 7, 2008 7:59:46 PM)
Hi
momma (Oct 7, 2008 8:00:00 PM)
is he feeling any differant anna
anna (Oct 7, 2008 8:00:08 PM)
what's new Matts?
anna (Oct 7, 2008 8:00:24 PM)
different, as in ??
matts-mom2002 (Oct 7, 2008 8:00:34 PM)
not much just sitting around
anna (Oct 7, 2008 8:00:52 PM)
how is Matt?
momma (Oct 7, 2008 8:00:54 PM)
better kent seemed to be more interjetic
matts-mom2002 (Oct 7, 2008 8:01:10 PM)
anna what is he doing 80 ml phr
matts-mom2002 (Oct 7, 2008 8:01:32 PM)
Matt is "WONDERFUL"
anna (Oct 7, 2008 8:01:37 PM)
energetic? R has always had lots of energy--enough to work full-time at least if we go to bed by 10
anna (Oct 7, 2008 8:02:05 PM)
new G tube since he weighed 87 lbs
matts-mom2002 (Oct 7, 2008 8:02:26 PM)
OH Matt is holding steady at 168 pounds
momma (Oct 7, 2008 8:02:59 PM)
thast a big dose anna he may work up to it but i would think it would take time kent weighs like 150's
matts-mom2002 (Oct 7, 2008 8:03:06 PM)
we only use the tube if he needs something liquid , like meds or laxitives
momma (Oct 7, 2008 8:03:29 PM)
does matt have motility issues ?
matts-mom2002 (Oct 7, 2008 8:04:09 PM)
Matt is eating by mouth well right now, he has had a complete turn around from the last year of illness
momma (Oct 7, 2008 8:04:18 PM)
kent doesnt really need calories but helps move thing along
momma (Oct 7, 2008 8:04:23 PM)
thats great
anna (Oct 7, 2008 8:04:26 PM)
so good to hear Matts
bob-j (Oct 7, 2008 8:04:57 PM)
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anna (Oct 7, 2008 8:05:05 PM)
Hi Bob
bob-j (Oct 7, 2008 8:05:12 PM)
hello
momma (Oct 7, 2008 8:05:14 PM)
hi bob
matts-mom2002 (Oct 7, 2008 8:05:23 PM)
he is breathing well and heart is stable and weight is good he "poops" good now .. God is so good
bob-j (Oct 7, 2008 8:05:26 PM)
hello
bob-j (Oct 7, 2008 8:05:40 PM)
how r we tonight?
anna (Oct 7, 2008 8:05:48 PM)
Matts, how is your health now? were you able to "work" outside the home?
momma (Oct 7, 2008 8:06:06 PM)
my son is good im a bit gimpy but kent is good
matts-mom2002 (Oct 7, 2008 8:06:26 PM)
Mostly his turn around is due to removing more than 80 % of his unnessesary meds
anna (Oct 7, 2008 8:06:34 PM)
did you have the MRI Momma?
momma (Oct 7, 2008 8:06:43 PM)
yea yesterday anna
anna (Oct 7, 2008 8:06:55 PM)
yikes--which ones were extra?
matts-mom2002 (Oct 7, 2008 8:07:19 PM)
I have been dealing with a back issue for 2 years now so I have no plans to work out of home right now .
anna (Oct 7, 2008 8:07:19 PM)
Bob, are you a dmd parent?
matts-mom2002 (Oct 7, 2008 8:07:27 PM)
brb
bob-j (Oct 7, 2008 8:07:29 PM)
yes
anna (Oct 7, 2008 8:07:42 PM)
how old is your son and how is he doing?
bob-j (Oct 7, 2008 8:07:43 PM)
son jonah
momma (Oct 7, 2008 8:07:44 PM)
i have the mri flims but dont know what im looking at have dr appt hopefully thurs
bob-j (Oct 7, 2008 8:07:52 PM)
9 at end of month
bob-j (Oct 7, 2008 8:08:05 PM)
doing great
momma (Oct 7, 2008 8:08:18 PM)
is he still walking bob?
bob-j (Oct 7, 2008 8:08:24 PM)
except for "tummy aches"
bob-j (Oct 7, 2008 8:08:26 PM)
yes
anna (Oct 7, 2008 8:08:38 PM)
my son is 27 and works full-time at that huge softwear place near Seattle
momma (Oct 7, 2008 8:08:48 PM)
my son is 22
anna (Oct 7, 2008 8:09:06 PM)
er, software even
bob-j (Oct 7, 2008 8:09:39 PM)
did anyone have probs with steriods with "tummy aches" ?
bob-j (Oct 7, 2008 8:09:56 PM)
wondering if we should stop them
twinglema (Oct 7, 2008 8:09:57 PM)
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anna (Oct 7, 2008 8:09:59 PM)
we are older parents--so no steroids
taysmom (Oct 7, 2008 8:10:01 PM)
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momma (Oct 7, 2008 8:10:05 PM)
dony recall that bob
anna (Oct 7, 2008 8:10:13 PM)
Hi Taysmom and Twingle
momma (Oct 7, 2008 8:10:17 PM)
hi twingle
twinglema (Oct 7, 2008 8:10:19 PM)
hey ann how is my fav computer geek doing
momma (Oct 7, 2008 8:10:22 PM)
and tays momo
taysmom (Oct 7, 2008 8:10:24 PM)
Hello everyone
twinglema (Oct 7, 2008 8:10:31 PM)
hi all
twinglema (Oct 7, 2008 8:10:38 PM)
momma how was YOUR mri?
bob-j (Oct 7, 2008 8:10:39 PM)
not sure if hes getting enough ranitidine
bob-j (Oct 7, 2008 8:10:46 PM)
hello all
momma (Oct 7, 2008 8:10:48 PM)
i just told them
anna (Oct 7, 2008 8:10:50 PM)
said wonk is fine--able to go to work Monday after the vomiting all night Thursday
taysmom (Oct 7, 2008 8:10:58 PM)
I was wondering if anyone has experience with a 15 year old or older?
momma (Oct 7, 2008 8:11:02 PM)
i have films here but dont mean a thing to me
anna (Oct 7, 2008 8:11:07 PM)
my son is 27
momma (Oct 7, 2008 8:11:11 PM)
my son 22
twinglema (Oct 7, 2008 8:11:13 PM)
wow he is super man
anna (Oct 7, 2008 8:11:18 PM)
your MRI Twingle?
twinglema (Oct 7, 2008 8:11:23 PM)
mine went straight to doc momma
twinglema (Oct 7, 2008 8:11:29 PM)
it was fine
momma (Oct 7, 2008 8:11:30 PM)
oh
momma (Oct 7, 2008 8:11:38 PM)
no surgery?
twinglema (Oct 7, 2008 8:11:41 PM)
noisy-headphones dont help
taysmom (Oct 7, 2008 8:11:46 PM)
My son is in high school and has limited arm function and is getting very tired. School work, he needs to be assisted with an aide.
momma (Oct 7, 2008 8:12:04 PM)
yea at least this on ewas an open mri
twinglema (Oct 7, 2008 8:12:08 PM)
haven't heard yet, hope not
anna (Oct 7, 2008 8:12:09 PM)
taysmom--see if they will get him a HeadMouse
bob-j (Oct 7, 2008 8:12:10 PM)
how old tays?
matts-mom2002 (Oct 7, 2008 8:12:31 PM)
ok I am back
taysmom (Oct 7, 2008 8:12:33 PM)
I am a single mom and work nights...use to be able to hire a tutor to sit with my son, but now cannot afford it. What to do about homework and projects
twinglema (Oct 7, 2008 8:12:41 PM)
bet R appreciates us following his every bodily funtion lol
anna (Oct 7, 2008 8:12:42 PM)
my son is software engineer who uses HeadMouse as he only can wiggle 2 fingers
momma (Oct 7, 2008 8:12:43 PM)
my son got shorten assingments
taysmom (Oct 7, 2008 8:12:45 PM)
Tay is 15years old. with DMD
taysmom (Oct 7, 2008 8:13:14 PM)
i will look into the Head mouse thanks
bob-j (Oct 7, 2008 8:13:24 PM)
im new to this so im sorry for the questions all
anna (Oct 7, 2008 8:13:27 PM)
at 15 my son leaned over keyboard and typed with pencil tips
twinglema (Oct 7, 2008 8:13:29 PM)
my son is only 11 but i have already asked for shortened assignments and to grade him on what he gets done in class to lower homework
momma (Oct 7, 2008 8:13:34 PM)
like if they got 20 spelling words he got 10 and i requested no home work
anna (Oct 7, 2008 8:13:47 PM)
we love questions--just may not have answers lol
bob-j (Oct 7, 2008 8:13:55 PM)
thanks
momma (Oct 7, 2008 8:14:04 PM)
is your son in reg ed my was in special ed
twinglema (Oct 7, 2008 8:14:12 PM)
been thinkin about your mom anna-how is she
bob-j (Oct 7, 2008 8:14:29 PM)
dont we all just wish someone had all the answers
anna (Oct 7, 2008 8:14:32 PM)
gosh, my son carried full load and got almost straight A's, even in Chemistry
bob-j (Oct 7, 2008 8:14:39 PM)
pray everyday
taysmom (Oct 7, 2008 8:14:48 PM)
thanks, he has shortened assignments in IEP, but changed to a different school district. He is in Regular Ed, he is extremely bright, at previous school they had Resource class.
twinglema (Oct 7, 2008 8:14:51 PM)
yeah but he is wiz kid
twinglema (Oct 7, 2008 8:15:05 PM)
IEP is supposed to follow him
matts-mom2002 (Oct 7, 2008 8:15:07 PM)
Matt went to public school until 6th grade then to A "MULTI handicap public school .
taysmom (Oct 7, 2008 8:15:14 PM)
now they only have Regular or special ed.
anna (Oct 7, 2008 8:15:16 PM)
my Mom is okay, but won't talk on the phone to me anymore. I have been too sick lately to go over there either
twinglema (Oct 7, 2008 8:15:22 PM)
awww
twinglema (Oct 7, 2008 8:15:32 PM)
my mil decided to go down the stairs yesterday
momma (Oct 7, 2008 8:15:35 PM)
my son is extremly brigh also just at a slower pace
anna (Oct 7, 2008 8:15:39 PM)
uh oh
twinglema (Oct 7, 2008 8:15:46 PM)
luckily she did not fall
taysmom (Oct 7, 2008 8:15:51 PM)
i never heard of a multi handicap public school, are there any in So. California?
momma (Oct 7, 2008 8:16:14 PM)
thats what my son was in is mh class
momma (Oct 7, 2008 8:16:45 PM)
its for more than one disablity learning and had physical limitation
matts-mom2002 (Oct 7, 2008 8:16:45 PM)
I don't know we have had one here where we live for over 30 years
twinglema (Oct 7, 2008 8:16:57 PM)
well i will be back on thursday you all take care
twinglema (Oct 7, 2008 8:17:00 PM)
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anna (Oct 7, 2008 8:17:04 PM)
my son got through University with a notetaker in each class, and a proctor to give him his tests in private with 50% extra time
bob-j (Oct 7, 2008 8:17:26 PM)
did anyone have a person from an MD clinic speakj to their son's school?
taysmom (Oct 7, 2008 8:17:33 PM)
did you have to pay for that or did you receive some type of funding?
anna (Oct 7, 2008 8:18:02 PM)
no, the school PT did, and she did a wonderfull job. all the kids tried to protect my son from there on out
taysmom (Oct 7, 2008 8:18:19 PM)
nope...does it help if MDA talks to the school?
bob-j (Oct 7, 2008 8:18:21 PM)
thats nice
momma (Oct 7, 2008 8:18:22 PM)
yea the rehab specialist and pt from mda came
matts-mom2002 (Oct 7, 2008 8:18:29 PM)
it was covered by our regular school district it was 27,000 dollars a school year they also paid for transpotation
anna (Oct 7, 2008 8:18:52 PM)
just the cost of University tuition/an apartment and food, books, etc. He won losts of scholarships.
anna (Oct 7, 2008 8:19:19 PM)
lots even
bob-j (Oct 7, 2008 8:19:28 PM)
were your sons ok with someone talking about them to their friends?
anna (Oct 7, 2008 8:19:42 PM)
of course, I had to go live on campus with him and not everyone can do that
matts-mom2002 (Oct 7, 2008 8:19:49 PM)
we had the scocial worker from MDA clenic speak to the staff when Matt was in 4th grade and showing more aparent signs of DMD
jen-c (Oct 7, 2008 8:20:11 PM)
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momma (Oct 7, 2008 8:20:16 PM)
matts do you work outside the home too?
taysmom (Oct 7, 2008 8:20:18 PM)
hello jen
anna (Oct 7, 2008 8:20:24 PM)
my son was not happy about it actually
bob-j (Oct 7, 2008 8:20:25 PM)
im approaching that point in my sons life
anna (Oct 7, 2008 8:20:28 PM)
Hi Jen
matts-mom2002 (Oct 7, 2008 8:20:35 PM)
No I stay home
jen-c (Oct 7, 2008 8:20:36 PM)
Hello everyone
bob-j (Oct 7, 2008 8:20:42 PM)
hello jen
matts-mom2002 (Oct 7, 2008 8:21:20 PM)
Matt is 24 years old now and graduated high school in 2003
jen-c (Oct 7, 2008 8:21:53 PM)
anyone watching the debate
anna (Oct 7, 2008 8:21:58 PM)
yes
momma (Oct 7, 2008 8:22:02 PM)
it been hard to find things to do kent work couple hr a week and he cant play palystation anymore so hes gottne pretty bored
bob-j (Oct 7, 2008 8:22:07 PM)
i hear the debate on in the other room and I hear them talking bout spending Billions of dollars
bob-j (Oct 7, 2008 8:22:26 PM)
cant we spend it on diseases
jen-c (Oct 7, 2008 8:22:34 PM)
amen!
anna (Oct 7, 2008 8:22:35 PM)
I wish...
bob-j (Oct 7, 2008 8:23:14 PM)
Jerry Lewis said that since 196? weve raised bout 2 billion
anna (Oct 7, 2008 8:23:15 PM)
they are telling us we are all going to be poor when we are old anyways
bob-j (Oct 7, 2008 8:23:34 PM)
yet we spend 10 billion a month in Iraq
jen-c (Oct 7, 2008 8:23:44 PM)
no kidding
matts-mom2002 (Oct 7, 2008 8:23:56 PM)
Matt plays vidio games again , he is having occupational tharapy to loosen his fingers, they were very contrcted, and we made a sling device to hold his wrist up so me can use the game controller
taysmom (Oct 7, 2008 8:24:01 PM)
they should be spending that on researching diseases.
bob-j (Oct 7, 2008 8:24:07 PM)
yes
bob-j (Oct 7, 2008 8:24:28 PM)
Sorry I got up on my soapbox there for a minute
anna (Oct 7, 2008 8:24:45 PM)
move over, we may all join you
taysmom (Oct 7, 2008 8:24:48 PM)
what other hobbies does your kids have? Mine plays alot of video games and loves to take pictures, but the camera with lens is getting pretty heavy.
momma (Oct 7, 2008 8:24:49 PM)
we have somthing made to hold controler but ihe still cant use it
jen-c (Oct 7, 2008 8:24:51 PM)
it sounds like they are saying the same things over and over
bob-j (Oct 7, 2008 8:25:15 PM)
i think its a repeat lol
jen-c (Oct 7, 2008 8:25:21 PM)
the debate, i mean
matts-mom2002 (Oct 7, 2008 8:25:38 PM)
We used an IV poll and a stil and made a strap to rest his wrist in it works good
bob-j (Oct 7, 2008 8:25:43 PM)
yada yada yada
matts-mom2002 (Oct 7, 2008 8:26:07 PM)
stick sorry
taysmom (Oct 7, 2008 8:26:17 PM)
gotta feed kids...be right back
momma (Oct 7, 2008 8:26:22 PM)
oh ok
anna (Oct 7, 2008 8:26:35 PM)
my son hasn't played anything but games on computer for about 7 years. his job as a programmer keeps him busy 40 hours a week, then he has to go to bed early to keep this up. also chats on phone and his young professional church group has lots of activities.
bob-j (Oct 7, 2008 8:26:56 PM)
good and active
jen-c (Oct 7, 2008 8:27:02 PM)
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bob-j (Oct 7, 2008 8:28:01 PM)
since we found out on April 3rd I dont think weve sat on the couch for more than 5 minutes
anna (Oct 7, 2008 8:28:06 PM)
and make sure they have friends with dmd so they don't feel so alone
matts-mom2002 (Oct 7, 2008 8:28:09 PM)
Matt has a bible study group at home on fridays , and shopping "Yeah I said Shopping" and board games , vidieo games and , computor
bob-j (Oct 7, 2008 8:28:12 PM)
I'm tired lol
anna (Oct 7, 2008 8:29:10 PM)
when we found out I wanted to be busy every minute too, but the doc had said we only had to age 16 and son is almost 28
bob-j (Oct 7, 2008 8:29:31 PM)
does anyone use the steriods in here?
anna (Oct 7, 2008 8:29:34 PM)
so, we thought we had to hurry and do everything
bob-j (Oct 7, 2008 8:29:37 PM)
thats awesome
matts-mom2002 (Oct 7, 2008 8:29:44 PM)
Most of Matts DMD friends have passed away so he keeps busy with family
momma (Oct 7, 2008 8:30:29 PM)
we dont have many boys period here and none kent s age
taysmom (Oct 7, 2008 8:30:32 PM)
we used the steroids for a few years, but he gained so much weight we had to take him to a nutritionist.
bob-j (Oct 7, 2008 8:30:52 PM)
which steriod?
bob-j (Oct 7, 2008 8:31:01 PM)
we use prednisolone
bob-j (Oct 7, 2008 8:31:12 PM)
not sure if i like it
anna (Oct 7, 2008 8:31:39 PM)
host on Thursday's chats son uses Deflazacort
taysmom (Oct 7, 2008 8:31:53 PM)
I used Calcort or better known as Deflazecort
bob-j (Oct 7, 2008 8:32:01 PM)
side effects the same?
bob-j (Oct 7, 2008 8:32:23 PM)
do u need stomach stuff with it?
anna (Oct 7, 2008 8:32:24 PM)
supposedly not as bad, but I have no personal experience with them
taysmom (Oct 7, 2008 8:32:46 PM)
mostly, my son's disposition was a little irritable and he had some stomach aches, we gave him some Tums.
bob-j (Oct 7, 2008 8:33:05 PM)
not sure if steriods r worth it
taysmom (Oct 7, 2008 8:33:34 PM)
He was walking and transferring until 5th grade. We were also in UCLA's clinical trial for a year using Albuterol steroid pills.
matts-mom2002 (Oct 7, 2008 8:35:26 PM)
Matt used steroids in the beginning for 2 years but he gained alot of weight too so they discontinued them
kling (Oct 7, 2008 8:35:51 PM)
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anna (Oct 7, 2008 8:35:58 PM)
Hi Kling
taysmom (Oct 7, 2008 8:35:58 PM)
Is anyone using steroids for an immobile person. Doctors say there are mixed benefits, keeping the heart and lungs stronger.
momma (Oct 7, 2008 8:35:59 PM)
same here matts
momma (Oct 7, 2008 8:36:04 PM)
hi kling
taysmom (Oct 7, 2008 8:36:09 PM)
hi kling
kling (Oct 7, 2008 8:36:18 PM)
hello everyone
anna (Oct 7, 2008 8:36:45 PM)
whatsup Kling?
matts-mom2002 (Oct 7, 2008 8:36:46 PM)
Matt has not been on steroids in years and his lung function is not any better or worse
anna (Oct 7, 2008 8:37:18 PM)
my son is still able to use NIV methods at age 27
kling (Oct 7, 2008 8:37:21 PM)
taysmom, my son takes steroids and he hasn't walked in about 5 years
bob-j (Oct 7, 2008 8:37:22 PM)
still walking?
matts-mom2002 (Oct 7, 2008 8:37:36 PM)
I think this DMD is just what it is all the msteroids do is put off the enevidible..
kling (Oct 7, 2008 8:38:06 PM)
alot going on here, anna...my daughter hurt her "good" knee last week playing volleyball :-(
kling (Oct 7, 2008 8:38:10 PM)
and it's her senior year
anna (Oct 7, 2008 8:38:24 PM)
oh no--knees are not doing well recently
kling (Oct 7, 2008 8:38:36 PM)
I saw that on the transcripts
matts-mom2002 (Oct 7, 2008 8:38:47 PM)
I am gonna go have a good evening and a blessed week everyone
momma (Oct 7, 2008 8:38:56 PM)
nights matts
anna (Oct 7, 2008 8:38:59 PM)
goodnight Matta
kling (Oct 7, 2008 8:38:59 PM)
night matts
bob-j (Oct 7, 2008 8:39:03 PM)
night
matts-mom2002 (Oct 7, 2008 8:39:07 PM)
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kling (Oct 7, 2008 8:39:24 PM)
hopefully, my daughter will be able to finish the season, even though I will be a nervous wreck!
momma (Oct 7, 2008 8:39:44 PM)
hopefully youth is on her side kling
anna (Oct 7, 2008 8:39:52 PM)
I know--moms have too much stress
bob-j (Oct 7, 2008 8:40:06 PM)
has anyone ever spoke with Dr. Jerry Mendell?
kling (Oct 7, 2008 8:40:19 PM)
Dr. Mendell is who we go to see, bob
momma (Oct 7, 2008 8:40:20 PM)
yea he's here in ohio
bob-j (Oct 7, 2008 8:40:32 PM)
How is he?
kling (Oct 7, 2008 8:40:36 PM)
do you see him bob?
bob-j (Oct 7, 2008 8:40:56 PM)
We were going to but we havent yet
kling (Oct 7, 2008 8:41:06 PM)
he has a mission to find a cure!
bob-j (Oct 7, 2008 8:41:11 PM)
yes
kling (Oct 7, 2008 8:41:21 PM)
We really like him and all his staff
bob-j (Oct 7, 2008 8:41:23 PM)
i hope he does
momma (Oct 7, 2008 8:41:30 PM)
do you liive near or in ohio bob
bob-j (Oct 7, 2008 8:41:36 PM)
and gets filthy rich
kling (Oct 7, 2008 8:41:42 PM)
we travel 4 hours to see him three times a year
bob-j (Oct 7, 2008 8:41:44 PM)
wisconsin
bob-j (Oct 7, 2008 8:41:53 PM)
bout 10 hours
bob-j (Oct 7, 2008 8:42:00 PM)
no prob
bob-j (Oct 7, 2008 8:42:37 PM)
we were sort of waiting till Phase 2 of trial starts
kling (Oct 7, 2008 8:42:51 PM)
we have even been to a meeting about the gene therapy (before the first one)
bob-j (Oct 7, 2008 8:43:00 PM)
he wanted us in Phase 1
kling (Oct 7, 2008 8:43:20 PM)
ahh...my son volunteered for that, but did not get chosen
bob-j (Oct 7, 2008 8:43:21 PM)
good news? i hope
bob-j (Oct 7, 2008 8:43:33 PM)
hope
bob-j (Oct 7, 2008 8:43:35 PM)
hope
kling (Oct 7, 2008 8:43:40 PM)
and they asked us if he wanted to be in the next phase
bob-j (Oct 7, 2008 8:43:48 PM)
awesome
kling (Oct 7, 2008 8:43:53 PM)
but we decided against it
bob-j (Oct 7, 2008 8:44:12 PM)
yea same here
kling (Oct 7, 2008 8:44:14 PM)
only because my son absolutely hates to miss school and it would be a lot of trips back and forth
kling (Oct 7, 2008 8:44:31 PM)
and if there are any complications, I didn't like being so far away
bob-j (Oct 7, 2008 8:44:34 PM)
that and only biceps
bob-j (Oct 7, 2008 8:44:56 PM)
waiting for larger muscle group
kling (Oct 7, 2008 8:44:58 PM)
this one is going to be in the foot
kling (Oct 7, 2008 8:45:21 PM)
or at least around the foot area, can't remember exactly where he said
anna (Oct 7, 2008 8:45:43 PM)
thank God for our brave guinea pigs who may lead the way for the rest
bob-j (Oct 7, 2008 8:46:04 PM)
i heard they just found more promising breakthroughs in exon skipping
bob-j (Oct 7, 2008 8:46:14 PM)
exon23 now
bob-j (Oct 7, 2008 8:46:19 PM)
not 51
bob-j (Oct 7, 2008 8:46:49 PM)
my son has frameshift
bob-j (Oct 7, 2008 8:48:00 PM)
one little tiny Nucleotide in exon 29 keeps him from being "normal"
bob-j (Oct 7, 2008 8:48:21 PM)
and i use "normal" in the loosest sense
anna (Oct 7, 2008 8:48:35 PM)
lol, we understand
anna (Oct 7, 2008 8:50:04 PM)
do you have other children Bob and Taysmom?
bob-j (Oct 7, 2008 8:50:28 PM)
younger son 5
bob-j (Oct 7, 2008 8:50:43 PM)
no signs but havent tested yet
anna (Oct 7, 2008 8:50:47 PM)
Kling, was your daughter hoping for a sports scholarship?
bob-j (Oct 7, 2008 8:52:05 PM)
time to tuck them in I can hear them laughing upstairs - funny
bob-j (Oct 7, 2008 8:52:10 PM)
night all
kling (Oct 7, 2008 8:52:11 PM)
no, thank goodness!
kling (Oct 7, 2008 8:52:17 PM)
she just loves volleyball
anna (Oct 7, 2008 8:52:17 PM)
join us again Bob
bob-j (Oct 7, 2008 8:52:25 PM)
i will
bob-j (Oct 7, 2008 8:52:34 PM)
thanks for listening
anna (Oct 7, 2008 8:52:45 PM)
np
bob-j (Oct 7, 2008 8:52:53 PM)
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anna (Oct 7, 2008 8:53:27 PM)
my hubby broke his ankle playing volleyball(when he was about 45!)
anna (Oct 7, 2008 8:54:43 PM)
well, gtg see what I'm serving for dinner. Goodnight all.
kling (Oct 7, 2008 8:55:23 PM)
night anna
anna (Oct 7, 2008 9:02:11 PM)
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kling (Oct 7, 2008 9:02:26 PM)
I've got to run also. Good night.
kling (Oct 7, 2008 9:02:43 PM)
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momma (Oct 7, 2008 9:12:44 PM)
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