12.29.2005
09:45 PM - 12:15 AM EDT
PARENTchat / DMDParentChat

raybear -- {welcome raybear}
mikebrollin -- {welcome mikebrollin}
raybear -- Good evening to all and a Happy New Year full of blessings since this is the last chat of 2005
raybear -- hi mike
mikebrollin -- hey ray
raybear -- how r u? may I ask what type of MD you have?
raybear -- my son has Duchenne
mikebrollin -- fine...DMD
mikebrollin -- im 29
raybear -- my son is 14
raybear -- have you ever been to dmd pioneers site?
mikebrollin -- hows his outlook?
mikebrollin -- no
raybear -- he's a very happy guy
mikebrollin -- great to hear
raybear -- you can google DMD Pioneers. all are over 16 and many men with dmd :0)
mikebrollin -- ok ill check it out
raybear -- how are you doing?
mikebrollin -- im doing well...im on a vent
raybear -- we are excited to be getting new wheels..suppose to arrive tomorrow
raybear -- how long you have a vent?
mikebrollin -- good..i bet you all are very exited
mikebrollin -- eight monthes now
raybear -- very! and feeling blessed cuz it only took a month. new midwheel in burnt orange
mikebrollin -- cool
raybear -- not too long. did u use and NIV, bipap or anything before the vent?
mikebrollin -- bipap for about 4 years
raybear -- we aren't there yet. do have a cough assist to help if he gets a cold. other than chair and starting heart meds my son is doing pretty ok
mikebrollin -- i wish him the best
raybear -- he's lost some arm strength this year and that really bugs him more than anything else. but he is rarely bummed at all. we adapt
raybear -- ty the best to you too
mikebrollin -- yes i remember how frustrateded i was
raybear -- he is just afraid of losing his ability to play video games. and I can't blame him
raybear -- brb k? need to serve him his dinner
mikebrollin -- {welcome mikebrollin}
mikebrollin -- {goodbye mikebrollin}
momma -- {welcome momma}
momma -- hi raybear
raybear -- back hi momma
raybear -- ah lost mike ... come again mike
momma -- wb
raybear -- ty how you doing?
danielle_s -- {welcome danielle_s}
raybear -- hi danielle
momma -- hi daniell_s
momma -- good and you?
danielle_s -- hi
raybear -- good here
raybear -- is this your first chat danielle?
danielle_s -- nope was here a few times b4 been quite some time though
momma -- do you have a child with dmd daniell?
momma -- i have a son with dmd he's 19.
danielle_s -- my just turned 7 year old son
raybear -- my son is 14 and has dmd. could you share and help me remember? thanks
momma -- how is he doing?
raybear -- u beat me to it LOL
danielle_s -- ok i guess
danielle_s -- can't do stairs by himself anymore and having hard time getting off floor now too
momma -- sorry to hear that i rember those days it hard to see!
raybear -- that is a hard time
danielle_s -- we are gonna be building him a ramp to use this spring
raybear -- nice, that will help
momma -- that will be a great help to him!:)
danielle_s -- he gets to use a computer at school to do all his written assignments on
raybear -- great that the school is accomidating him :)
raybear -- sp doesn't count right? LOL
momma -- some time s we need to encourage as much independance as possible and a computer will help!
danielle_s -- they also have a wheelchair they let him use sometimes
raybear -- brb ray needs help
momma -- ok
danielle_s -- i'm wondering if i need to get on efor the house too
momma -- we had one at home
danielle_s -- he only gets ot once a week and pt once amonth at school but i found a place pretty close that does equine thearpy and will prob. have him enrolled in that next month
raybear -- danielle, a good wc for him is a good idea. if he has good seating that will help keep his spine straight and contractures from getting bad..even if he uses it only sometimes.
raybear -- we had a custom chair at that age...manual
momma -- kent started out with a firm back and kent to this day sit well in his chair and no back surgery!
danielle_s -- i think we will see about getting him one when he has is next appt at the shriners
danielle_s -- last year when we were there he didn't need one yet but this year he doesn't want to walk as much
raybear -- i think that is a good idea. you don't want to wait until he can't walk at all cuz they can take a while to get. nice to have it on hand even if for years (hopefully)
raybear -- good momma! our new wheels are suppose to be here tomorrow
momma -- cool
momma -- what kind is he getting what color?
raybear -- Q-6000 by Pride, centerwheel in burnt orange
momma -- does he use a tray on it my son has a cool sticker collection on his!
raybear -- tall invacare back, ultrasupracore cushion, tilt (didn't push ins to do recline but can add it later if we want)
raybear -- no tray ordered. our DME didn't think ins would approve this chair so we left of the "extras" to order later ;)
raybear -- but it was approved in 3 days!
momma -- wow
raybear -- raymon told the dme he'd get it cuz he prayed.
danielle_s -- from what i've been told thats really fast
danielle_s -- we have medicaid so i'm sure when we order one it will take forever
momma -- kents has a permobile
raybear -- it is. we prayed and so far all our equipment has been approved like that...except hospital bed was a pain
momma -- do you have private ins too?danielle
danielle_s -- nope
sunney -- {welcome sunney}
raybear -- medicaid can be a bugger I guess. with hubby retiring soon I'm working at getting the big stuff paid for first
momma -- we have both one usually pays part and medicade pays the rest
sunney -- good evening all
danielle_s -- Only just got full time recently so only have ins. on me
momma -- hi sunney
sunney -- hi momma, nice to see you
raybear -- ah, can u add him danielle?
raybear -- hi sunney
momma -- you too!
sunney -- hi raybear
danielle_s -- not till next year then ins wont cover for 2 years since it is preexisting
raybear -- if he has insurance (medicaide) the new ins cannot use the prexisting clause I don't think. call your ins comminssion
momma -- some times ins wont cover pre-exsiting medical condition
raybear -- prexisting can only apply to someone who is uninsured for 3 months. you should call state insurance commission or an advocacy. :o)
momma -- lucky my hubby has work at same place for over 25 yrs
momma -- how are thing with you sunney?
danielle_s -- plus company i work for is in chapter 11 right now so don't really want to add him till i know it will still be there
raybear -- we've been investigating ins because we cannot aford to keep the one we have when hubby retires and were told as long as there is no lapse in coverage a new ins cannot deny coverage
sunney -- danielle, it is my understanding of insurance law that if you are covered under any insurance, including medicaid, and go on to any other insurance, including private that the pre-existing condition waiting period doesn't apply.
momma -- i think your correct on that raybear
sunney -- hmmm, must have paused my screen, there is a whole bunch of conversation that just showed up!
momma -- but i'm sure it's different in every state
raybear -- that is federal law under HIPPA
momma -- oh i see
sunney -- you are right raybear.
sunney -- we have changed insurance companies several times over the years and never had pre-existing apply.
raybear -- of course most ins won't tell ya that, they will quietly assume you aren't covered and to the pre-existing stuff lol
sunney -- btw - i'm good momma and how are things with you?
momma -- somtimes your denied under false pre thier not gonna say it's because pre exsiting clause
momma -- good thanks
sunney -- i've read the transcripts and it sounds like kent has recovered from his cold
momma -- everybody well at your house it sounds like a lot if people had a bug
sunney -- nick had it here - thought he had pneumonia but thankfully it cleared up
momma -- yup like i told someone last night i truely think zycam helped?
raybear -- glad to hear he is better sunney, and momma!
danielle_s -- my son has been sick for every holiday from day one
sunney -- we got the cough assist for him finally but unfortunatly he doesn't understand what we are asking him to do and just holds his breath so no results
sunney -- danielle, how old is your son?
momma -- thats a bummer danielle!
sunney -- thanks raybear, now just to keep the germs away
raybear -- raymon did that too! lol practice and relaxing is hard
danielle_s -- he is 7
danielle_s -- found out he is allergic to penicillin and cefzil too
sunney -- raybear, does raymon have cognitive disabilities?
momma -- we'er working on getting cough assist for kent
raybear -- oh no :( raymon has not handled many antibiotics either and that is scary
raybear -- yes sunney
sunney -- i keep trying to explain it to him but he just doesn't get it and then gets frustrated telling me that the "thing" is plugging his nose
danielle_s -- {welcome danielle_s}
raybear -- i have to visually inhale with him and yell "out fast" with the pull but he'll hold breathe still. can't do oximeter tests either
danielle_s -- night guys gotta make him go to bed
sunney -- do you still attempt to use it raybear?
sunney -- good night danielle and good luck with insuance
raybear -- yes and we are getting better. do u use the auto setting?
momma -- night danielle
raybear -- night danielle, take care and happy new year
momma -- glad you came !
sunney -- have tried both ways hoping that on manual i can cath him when he's inhaling but so far no luck
sunney -- catch him that is
raybear -- we got a little better by doing manual...i would watch his breathing and verbally go "in"...out...in...out and then machine In and then out and set low then higher over a week or so.
sunney -- we'll keep trying but even the respiratory therapist wasn't sure nick would have the ability to cooperate
raybear -- just got to keep trying and start so low it won't help but he can get use to it
raybear -- our pulmo wonders that too and so he's really against trying bipap or anything until "raymon is really sick" then plan on trach....URG
sunney -- oh the joys - most of them don't have a clue
raybear -- honestly we are improving but it isn't easy. hope he can learn before we need NIV but I wonder too
sunney -- so momma, are you closer to getting an assist for kent?
momma -- i guess kent seems to do better when i tell him it will help him feel better just like bipap he was scared of it the he did it one night and then no looking back!
momma -- right now getting dr to write a letter for ins it needs to be detailed to why he needs it!
raybear -- raymon understand the help and tries but that air blows he holds breathe and when it sucks he blows but stops half way and holds breathe
momma -- brb kent needs slippers
sunney -- it's tough trying to figure out what will work the best for our boys. nick's skin breaks down when any plastic touches it so i don't know what will happen with bipap
raybear -- our ins approved outs no prob . dr bachs site has a sample letter
raybear -- yeah, sometimes I think maybe a trach will be our only option if he wishes to do that
sunney -- ours denied it but then i found out the dme company is owned by uc davis so they faxed over nick's records showing double pneumonia and intibation and it got approved the same day
sunney -- i don't know what we'll do. nick doesn't have the capacity to make those decisions
raybear -- i was surprised we got ours actually. he has had no resp infections or probs yet
momma -- see kent hasn't had phnemonia but why does he need to be dealthly sick to get it?
sunney -- well its smarter of the insurance companies to pay for the machine than run the risk of a major hospitalization
raybear -- i will let raymon choose. he chose to start heart meds so I think he'll be ready when that time comes
raybear -- u are right momma! the idea is to help before they get pneumonia!
sunney -- i agree momma, they should look at it as a prevantative measure
momma -- kent's so pro life help as long as quality is still thier he get so scared when he's sick!
raybear -- crossing fingers/we haven't been sick but i know ray will be scared too as will I be! ya just can't tell and I have no faith in our drs
sunney -- i bet he does momma. we are thankful nick doesn't fully understand what is happening to him and isn't afraid but it is difficult knowing we are the ones that will have to make the decisions.
sunney -- we were lucky raybear. nick went from 95% saturation to 45% right before my
sunney -- eyes and was intibated for 19 days and is now fine
momma -- kent doesn't fully understand but enough dmd stinks!
raybear -- oh wow! yeah and our pulmo is pro oxygen and won't listen to parents. I am searching for new pulmo but they are all in the same office :(
sunney -- yes momma it does stink
sunney -- that makes it tough raybear
momma -- ours is a butt head but i can be just as abig as a butthead !
raybear -- i remember when I dreaded him turning 14...I'm glad it isn't like I had thought it would be but better
sunney -- the unknown is much more scarey than real life sometimes
raybear -- i tried to be a butthead but this guy is a flaming arsho.....bigger butt head than me! So I am pursuing behind his back so I can at least demand the hospital call for another opinion
sunney -- have you tried to show him any documentation on oxygen and dmd?
raybear -- rofl...yep and he said, "I have that journal in my office. We'll see when he's sick if you'll do what I say." and left the room without so much as picking up the articles
momma -- sunney is you son still see pediactics plum onary?
sunney -- yes he does, and pediatric gastro dr. too
raybear -- my consolation is the office staff thinks hes an ass too and gave me a few out of state drs to call :)
sunney -- he is a butt head raybear
momma -- i ask our dr if he was aware of dr bach and he just glared and siad i know of him!
raybear -- ours too momma! like they hate they guy
sunney -- or are intimidated by the fact he knows far more than they do
momma -- grrr!!! don't they think we deal with enough ?
sunney -- aint that the truth!
raybear -- it's almost like them saying: hey lady your kids gonna die so get over it
sunney -- i have been pretty lucky. we deal with uc davis and our primary dr. is very knowledgeable on dmd.
momma -- they should put themself in our postion when was the last time any of them had to ask thier living/dying wishes!
sunney -- i wouldn't wish this disease on anyone but i think if dr.'s had to walk in our shoes just for a little bit they would behave differently
raybear -- i know here it might be old school thinking too and quality of life assumptions. All I ask for is the choice and to be treated with dignity
sunney -- amen raybear
momma -- i amen that too!
raybear -- the best drs I've had don't necessarily know much about DMD from experience, but will listen to parent, read info, call other drs who have experience and work as a team
sunney -- that's what's important - team work
sunney -- well, i need to run, hope you all have a great evening
sunney -- good night and take care:)
sunney -- {goodbye sunney}
momma -- nightn glad you came tonight
raybear -- night sunney
momma -- still here raybear?
raybear -- yeah, sorry multitasking lol
momma -- me too!
raybear -- upgraded music player and some day will learn to download from it. got a speaker system for pc
momma -- lol
raybear -- tried trimming my poodle by myself today for first time
raybear -- poor poodle LOL
momma -- how did that go i do pur dogs it's hard on the back
raybear -- i sat on floor with him and got hairy too
chance -- {welcome chance}
raybear -- he stayed still better than I thought but I've been acclimating him to buzzer for a few days. the face though...uhhhh no luck
momma -- we found out the dog food we feed has a recall on it causing infections it has bactiria in it
raybear -- hi chance
momma -- hi chance
raybear -- oh no! what dog food is that??
momma -- diamond it a genaic for iams(sp)
raybear -- mario eats Natural Balance
raybear -- how r u chance? have a good Christmas?
chance -- {goodbye chance}
momma -- chance come back
raybear -- oh :( i sometimes think chance doesn't like it when I'm here :(
momma -- oh no?
raybear -- not sure why.
momma -- hmm
raybear -- i need to scoot anyway. Promised ray I'd play a game before my time to talk to Germany (birth mom) online.
raybear -- i need a clone! lol
raybear -- see ya next year! Have a safe and sane New Years
momma -- happy new yr to you and your family!
raybear -- {goodbye raybear}
momma -- {goodbye momma}
momma -- {welcome momma}
momma -- {goodbye momma}