12.27.2005
09:45 PM - 12:15 AM EDT
PARENTchat / DMDParentChat

momma -- {welcome momma}
averygoodman -- {welcome averygoodman}
momma -- helllo?
averygoodman -- ola
averygoodman -- how are you this evening mamma?
momma -- do you have dmd or know someone with dmd?
momma -- good and you?
averygoodman -- I have the adult Vs called Beckers
averygoodman -- I am well TY
momma -- oh i see i'm a mom of a 19 dmd son
averygoodman -- and you?
momma -- did you have a nice christmas?
averygoodman -- It's been a long road for you I imagine
averygoodman -- Yes, very nice... did you?
averygoodman -- I keep Jesus in the season
momma -- yes very nice ty
momma -- how old are you? if you don't mind me asking
averygoodman -- I am from Northwest Ohio
averygoodman -- I am 48
momma -- oh really?
momma -- so do you go to mda offica in toledo?
averygoodman -- the Toledo area
momma -- us too
averygoodman -- I go to the clinic. I've never been to the office
averygoodman -- really?
momma -- clinic thats what i meant sorry
averygoodman -- My first time in MCA Chat too
averygoodman -- NP
momma -- so what is your biggest health problem?
averygoodman -- How is your son doing?
momma -- fairly well
averygoodman -- just getting ito some breathing problems
momma -- he uses bipap at night and takes a small dose of lisinaprol
momma -- do you see vaughty and that group for pulmonary?
averygoodman -- I was diagnoised in 1992... and was still walking (with a cane) and slowly worked my way full time in an elect Whl chair
averygoodman -- vaughty?
momma -- my son was diag in 1991 he was 5 in a chair full time when he was about 8 or 9
averygoodman -- Bless his heart
momma -- barrnett ,snedden,vaughty are his doc for pulmonary
averygoodman -- I had my first child a month before my diagnoises
momma -- he is a very good kid i am blessed!
momma -- so your male or female i guess your screen name threw me?
averygoodman -- where are they located? It's best to look at how we are blessed.
averygoodman -- I am A VERY GOOD MAN
averygoodman -- male
momma -- at toledo hospital who do you see for your breathing problems?
momma -- ok
averygoodman -- I've only been to her once... I will have to ask m wife when she gets home
momma -- well pulmonary is at the hospital and clinic is across the street
averygoodman -- My wife is a Registered Nurse, so she picks the docs for me
momma -- i see
momma -- so is bmd inharited?(sp)
averygoodman -- did you home school your son?
averygoodman -- Yes, Beckers is X linked
momma -- he graduated but no he went to public school
averygoodman -- Lalaine Mattison, is my pulmonologist
momma -- i see
momma -- so are other in your family affected with bmd?
averygoodman -- Well, I am going to go 4 now. Nice Chatting with You. God Bless you and Your son
averygoodman -- No. I am the first and only one we no of
momma -- good night and happy new year!
marty5 -- {welcome marty5}
momma -- hi marty5
averygoodman -- Happy New Year! Email me some time. My name is Michael avery)h@hotmail.com
averygoodman -- avery_oh@hotmail.com
marty5 -- Hi just wanted to check and see everyone. hope all holiday was good for you
averygoodman -- scrap the first email,,,, it's wrong
momma -- long time no talk marty5
momma -- very good here how about you
averygoodman -- {goodbye averygoodman}
marty5 -- I just don't make the time to come on very much. Just thinking about everyone this week
marty5 -- We did well, this was the first Christmas with out Tom.
momma -- must be hard how old was he i can't remember?
momma -- sorry for my somtimers!
marty5 -- Just turned 21, it will be a year on the 31. We are going out of town.
marty5 -- how is your son doing. school Health, Friends????
momma -- he graduated last may he will be 20 in march he doing fairly well health wise and he has a job he works 6 hrs a week
marty5 -- that is great. what is he doing? tom was going to college. Can he go by himself?
momma -- friends well he chats to them online ocassionally but you know how it goes they go off to school ect.
momma -- transportation comes and gets him and brings him home and he has a job coach
marty5 -- Friends are the hardest for them. thank goodness for email.
momma -- yea well his cousin comes and plays playstation so that nice he realy likes that!
momma -- do you mind me asking questions about your son i don't want to prey
marty5 -- No go head, I want to be able to help anyway I can.
momma -- did your son have phnemonia?
marty5 -- Yes, it was the first time. I think he lost the strenth in the thorth.
momma -- was he on a vent? my son uses bipap at night and we talked to dr about the future even though we don't know how or when we want to be prepared
marty5 -- No he never wanted any thing like that. so he have meds and was put on oz from the emerg room. when we took him back that wanted to put a trat in and we told them no because he never wanted that and told us.
momma -- what kind of interventtion like breathing treatments ippb breathing treatments or vest cough assist
marty5 -- nothing. I think now we should of looked into breathin help sooner.
marty5 -- His spine was getting smaller now looking at pictures I can see him gettin shorter sitting
momma -- thats the way it should be kent wants to fight till the end as long as he can have some quality
momma -- did Tom have spinal sugery?
marty5 -- tom and Us did all we could to keep the fight up till the end.
marty5 -- no to Spinal Sugery didn't want to miss school or be different from the other boys
momma -- How is the rest of your family doing?
dmom1215 -- {welcome dmom1215}
momma -- yea feeling like you fit in is vey important!
momma -- hi dmom1215
marty5 -- our MD Dr was not very agress didn't try to find anything that would help. I always had to tell him what I wanted to do from finding it our self.
dmom1215 -- he everybody
momma -- exspecally for our boys!
marty5 -- Hi how are you tonight
dmom1215 -- very tired
momma -- are you new dmom?i'm a mom of 19dmd
momma -- holidays got ya zapped dmom?
dmom1215 -- no i am a mom who has lgmd but wants to have daughter but was advised not to because she will most likely have lgmd too
dmom1215 -- there is never any guantees when having children
dmom1215 -- but if think the benefits is well worth the chance
momma -- i see my daughter is a carrier of dmd and wants a child i guess she might adopt
momma -- or invetro is a option also for my daughter.
dmom1215 -- what is the percentage that she will have a child with dmd
marty5 -- We are going to do something like that when our daughter is ready for childred.
momma -- 50% she will pass to a boy
momma -- how old is your daughter marty?
marty5 -- what test did you have done to know
marty5 -- she is 23.
dmom1215 -- i have too boys so far so good no signs of lgmd yet
momma -- it was a blood test when my son was diag in 91 my daughter is soon to be 22
momma -- don't know specific test
dmom1215 -- have to go and spend some quality time with my 8 year old nephew bye
momma -- good night dmom
marty5 -- well not many here tonight has it been slow from the holidays.?
momma -- yea i guess i'm the only bored one i guess your stuck with me lol
marty5 -- never stuck with you. we are here together.
momma -- yea :)
marty5 -- It is great having this chat to come to. I am so glad that your son is doing so well and out working in the world.
marty5 -- We need to raise our boys to be able to care for them selfs or to tell someone how to do it so thay can be happy
momma -- thats for sure!
marty5 -- I think I amgoing to go for tonigh. starting to feel under the weather a little.
momma -- he gotten to the stage when he hears of another dmd boy passes he wants to know what happened and the wheels in his head are going 90 miles an hr wondering if he's next!
marty5 -- I have knowned about 6 in the last year.
momma -- i hope you and your family make it through this diffacult time and maybey your pain will ease hugs from me and a happy new year!
marty5 -- none of us ever know when we will go home.
momma -- 2 from kent cabin at camp they were both younger than him it was diffacult!
marty5 -- Thanks, give a big hug to your son and thanks for caring. noght all
momma -- goodnight!
marty5 -- {goodbye marty5}
momma -- {goodbye momma}
momma -- {welcome momma}
momma -- {goodbye momma}
uncle-o -- {welcome uncle-o}