12.22.2005
09:45 PM - 12:15 AM EDT
PARENTchat / DMDParentChat

jbsmom -- {welcome jbsmom}
hen -- {welcome hen}
hen -- hello
jbsmom -- Hello
hen -- how are you
jbsmom -- This is the first time for me here
jbsmom -- Fine and u
hen -- oic, i was just gonna ask if you were the chat host
hen -- i'm doing good
momma -- {welcome momma}
hen -- i just stopped by to say hi, i'm usually at the other chats
hen -- i was diagnosed with limb girdle md
momma -- hello hen
hen -- hi momma
hen -- how's it going
jbsmom -- My son has DMD . He's 25
hen -- do u have a child with dmd jbsmom
momma -- good how about you ?
hen -- oic
hen -- things are good thanks momma
hen -- how's he doing jbs
momma -- i'm a mom of 19 with dmd
momma -- how is he doing jbsmom?
momma -- oh and welcome !
jbsmom -- Right now we are having a mucus problem, otherwise on Bipap at night and a couple of hours during the day
jbsmom -- How's your son?
hen -- ic jbs
momma -- yea my son is on bopap at night he having problems with his stomach when he get up in the morning he looks 8 monthes pregnant
momma -- does you son have cough assist?
hen -- what causes that momma
hen -- the problem with his stomach
momma -- bipap not bopap lol
jbsmom -- Josh has that to. The Dr said to give him gas x, he has a feeding tube also
jbsmom -- No cough assist yet.
momma -- not sure hen were thinking his bipap give him a breath and when he breath out some stay in tummy or mabey his ibbp machine could also cause?
hen -- oic
momma -- i'm gonna talk to doc next week about cough assist
jbsmom -- Was thinking bout asking for one since getting harder to bring stuff up
jbsmom -- Is it hard to use
hen -- where you from jbs
hen -- california here
jbsmom -- Delaware
hen -- oic, is it cold there
momma -- everyone and everything i have read it sounds like it's just what we need for our boys!
jbsmom -- Yes It's 25 tonight
hen -- my goodness, brrr
jbsmom -- That's what I was thinking
jbsmom -- Momma where r u from
momma -- ohio it's gonna warm up tommroww it gonna get 40 wow lol!
jbsmom -- My husbands family is from Zanesville
hen -- heat wave lol
jbsmom -- We're getting rain for Christmas
hen -- really
jbsmom -- whats the temp in CA
hen -- well we've had rain the past 2 days
hen -- i hope it stops by Christmas
hen -- was 60 today
momma -- not sure but i think it suppose to snow christmas eve here?
hen -- about 2 wks ago it got down to 26
hen -- awww that would be beautiful momma
momma -- do you take your son to your mda clinic jbsmom?
jbsmom -- Yes we go to the adult clinic in wilmington
momma -- yea your right hen but it can all melt day after christmas !
jbsmom -- We only see a neurologist there
hen -- hehe
hen -- i know what you mean momma
jbsmom -- That's all I want is a dusting
hen -- lol
momma -- we already have 8" on the ground!
jbsmom -- Do u live up north?
momma -- northwest ohio
momma -- is zanesville southern ohio?
jbsmom -- southeast
jbsmom -- I think
momma -- oh i see
momma -- i'm close to like toledo
hen -- u have other children jbs?
jbsmom -- I think they're 1 hour away from Columbus
jbsmom -- I have a 22 year old son
hen -- oic jbs
hen -- i have 2 daughters, one 26 and one 33
hen -- oldest also has lgmd
momma -- my husband has family near columbus
jbsmom -- How long has your son been on a BiPap?
hen -- well i better say goodnight
momma -- almost a year
hen -- just wanted to stop by and say hi momma and Merry Christmas!
hen -- nice meeting you jbs
hen -- take care
hen -- God bless! :o)
jbsmom -- Night hen Merry Christmas
momma -- night hen glad ya stoped in same to you
jbsmom -- Josh has been on it for about 1 year too
jbsmom -- nice to meet u to
momma -- and he's 25 thats really good has he been in the hospital much?
hen -- ty
hen -- {goodbye hen}
jbsmom -- Last year was his first time, He stopped breathing on us.
momma -- oh no!
momma -- has he ever had phnenomia?
jbsmom -- That's when we got the bi pap,suction machine and the vest. He lost about 25 lbs and they suggested a feeding tube , No pnemonia
momma -- kent has a vest too
momma -- do you have a good pulmonary doc?
jbsmom -- They really didn't know why. But the dr in the er suggested a trach the first thing
momma -- ours is arrogant!(SP)
jbsmom -- We said there was other things that could be done. Our pulomnary is too!
jbsmom -- I asked about a pulse ox and he said that we didn't need it.
jbsmom -- brb
momma -- is your son a big person my son is he about 5'8" 220lbs
momma -- ok
momma -- we just got a pulse ox last monthes
jbsmom -- I'm back,He needed help
momma -- ok
jbsmom -- Josh is about 57 and 130
momma -- do you have help with his care?
jbsmom -- No I stopped working to stay home
momma -- i'm kent caregiver and when his dad is home from work he's a big help
jbsmom -- Same here
momma -- do you get restpite at all?
jbsmom -- You have a hoyer or do you lift him
jbsmom -- The state said that whenever I need it, but haven't used it yet
momma -- we have a ceiling lift but my hubby lift him i don't know how he does it!
jbsmom -- I quess we not sick of each other YET
jbsmom -- I lift Josh, he didn't like the hoyer plus it doesn't fit in some doorways
momma -- i get it now when thier agreeing to do it i don't think they pay for them in ohio anymore
jbsmom -- My husband does too
jbsmom -- Here I think they said I get 20 hours, but I have to give a couple days notice
momma -- our lift is a track lift it's in the ceiling
momma -- are you a pd caregiver if you don't mind me asking ?
jbsmom -- Did your insurance help with that?
jbsmom -- Ours won't
momma -- medicaide did
momma -- is your son on medicade waiver?
jbsmom -- No , I don't get paid, here u can't be a family member
momma -- i couldn't until kent turned 18
jbsmom -- He has medicaid.Delaware has stupid rules
momma -- sounds like it
jbsmom -- He has to be employed or going to school to have a pd caregiver and it can't be related to him
momma -- thats crazy
momma -- who do they think would care for him if you didnt and how much it would cost if he were in a instatution?
momma -- i think i wuold move to another state!
jbsmom -- I think that's what they want here. That's what we said to his case worker.
jbsmom -- She said that the state is trying to change it.
jbsmom -- Not in my lifetime proably.
jbsmom -- Well Momma, I have to go and get Josh on his vest and then ready for bed.
momma -- ok come again and have a nice holiday!
jbsmom -- Thanks for talking to me. I hope I get to do this again. Merry Christmas to your family and have a safe hoilday
jbsmom -- holiday
jbsmom -- Good night
momma -- same to you good night!
jbsmom -- {goodbye jbsmom}
momma -- {goodbye momma}
momma -- {welcome momma}
momma -- {goodbye momma}
mayra_t -- {welcome mayra_t}
mayra_t -- hi
mayra_t -- does anyone have info on duchenne or recent up to date research
mayra_t -- {goodbye mayra_t}
mayra_t -- {welcome mayra_t}
mayra_t -- {goodbye mayra_t}