12.21.2005
09:45 PM - 11:15 PM EDT
PARENTchat / ParentsofYoungAdultswithDMD

brucesmom -- {welcome brucesmom}
brucesmom -- hi
anna -- {welcome anna}
anna -- Hi Donna!
brucesmom -- hi anna
anna -- Christmas always causes mixed feelings for me. I am thankful for my son and yet somewhat sad because his life must be so "diffeent". How are you and Bruce?
anna -- different
brucesmom -- i hear you
brucesmom -- this year is very difficult for me too , besides all the stuff with bruce, my sister and nieces and nephew are moving to virginia two days after xmas
brucesmom -- that really sucks
anna -- My daughter and her daughter are staying with us. Babies are so much work! But, so is my son. But at least I can reason with him and he is able to express himself.
anna -- Oh, you will miss them!
brucesmom -- the last time i see them before they move will be xmas day
anna -- Were they helpful to you as support? I have no family here and I want to move closer to them.
brucesmom -- yes i will my one niece is three and so much fun, we are just being able to understand her and enjoy her and now they are leaving
anna -- It is hard to see things change--especially when people go away.
brucesmom -- yes my nephew was very helpful and he is bruces best friend too, he is the only cousin that sleeps over alot
brucesmom -- bruce will be heart broken
anna -- How far away will they be? Too far to drive I guess.
brucesmom -- about ten hour; s
anna -- Maybe the cousins can get webcams to keep in touch?
brucesmom -- thats funny that you said that, my husband just said something about a webcam
brucesmom -- i think xmas night i might get drunk lol
anna -- They are good for somethings--but I don't want people to see me all the time while I chat with them. I might be multitasking!
brucesmom -- where is everyone tonight
anna -- Christmas time--must be out shopping. I will avoid the stores until New Years.
brucesmom -- i have to go shopping tomorrow after work
brucesmom -- i have to buy stuff for my kids yet
brucesmom -- and go shopping for xmas dinner
anna -- My granddaughter threw up at a Weight Watcher's meeting this morning. We said, as we left, "bulemia is not good!".
brucesmom -- lol
anna -- Done with shopping except for food.
momma -- {welcome momma}
brucesmom -- hi momma
anna -- Hi Diane
brucesmom -- how are you doing
momma -- hello ladies!
anna -- Roy is enjoying watching his niece, but she has been vomiting. How are your colds?
brucesmom -- bruce is having a hard time with the bipap
brucesmom -- mine is gone
momma -- kent still got his i'm much better
anna -- It takes awhile to get used to it. I liken it to sticking your head out of a moving car and trying to breathe.
brucesmom -- he hates it
anna -- Sorry Kent got it, but you know all the techniques to help him.
brucesmom -- they said he has to wear it all night we are only up to an hour and a half
brucesmom -- tomorrow they are coming to draw blood
momma -- kent now battling a UTI his stomach is so bloated especially in the morning i wondering if his bipap is causing it?
anna -- Roy, and other dmd guys I know, also have the gassyness in the am after bipap.
anna -- I give Roy 2 tums the moment he wakes up, use Prilosec, and Gas-X as needed. It is a problem.
momma -- kent stomach looks like he's 8 monthes pregnant!
brucesmom -- yesterday i got a xmas card from someone we met at mda he is 19 years old still walking, driving a car, goes to college and has a girlfriend
anna -- Must not have dmd.
brucesmom -- maybe he has beckers, i dont know anyone that age that still walks and has no wheelchair
momma -- yea thats what i was thinking anna
brucesmom -- why would bipap give you gas?
anna -- Well, there are over 40 MD's to choose from.
brucesmom -- they go to canada every eight months to get his meds
anna -- Air pumped in has to go somewhere.
brucesmom -- he is on deflazacort
brucesmom -- oh i see
momma -- cause it gives you a breath in and doesn't all come out
momma -- it usually isn't this bad?
brucesmom -- ok
brucesmom -- when i saw a picture of this kid, i was very upset and didnt went bruce to see it
anna -- Bi-pap has help for the exhale, but gas still builds up. C-pap is continuous flow in with no help to exhale, so it would be worse for our boys if they used c-pap. CO2 could build up with c-pap and cause their brain to signal them not to breathe.
momma -- kent takes previciad and i gave him maloxs but still bloated
brucesmom -- i am happy the kid is still walking, but if bruce sees it he will really get depressed
anna -- Well, he must have a different kind of MD as you said, so it can't be compared. I would call the mom and find out what kind here son has so you will know for your peace of mind.
brucesmom -- i am so tired tonight, i came home from work took care of bruce, did five loads of laundry, snowblow the driveway
brucesmom -- i should call her she gave me her phone number
momma -- wow no wonder your tired donna
brucesmom -- oh and made hubby dinner when he got home from work at 8
anna -- This bloating seems to be a constant problem. All we can do is keep telling our pulmonologists it is a problem. I think it depends on if they snore or mouthbreathe as they use the bi-pap mask or nasal prongs.
brucesmom -- i still didnt eat dinner
brucesmom -- and did dishes
anna -- I would have no idea how to snowblow, but laundry quota is up since the baby is vomiting so much.
momma -- kent uses a mask and a chin strap to keep his mouth close
brucesmom -- when i get done online i am going to let calgon take me away
anna -- I am trying to make dinnere from the freezer becasue I need the space.
anna -- And still has bloating? Hmmm....
brucesmom -- i have one more day of work tomorrow
brucesmom -- and then off until jan 3
momma -- yep his mouth still comes open a little bit
brucesmom -- tonight i was getting mad the snowblower would not start
anna -- I will keep asking everyone what they reccommend for the problem.
momma -- i think i'm gonna go finish my shopping tommroww i tired of shopping belive or not
brucesmom -- after i slammed it around and was swearing at it, it finally started
anna -- We only have about 2" snow about every other year on the coast, but lots on the eastside of WA.
momma -- sometimes things work better if ya talk bad to them lol
anna -- I am not missing the cold of eastern WA where we went to school!
brucesmom -- like my husband lol
momma -- i 'm tiered of snow we have had snow on the ground sence thanksgiving but some of it will melt it's suppose to warm up to 40 on friday
anna -- I get tired of rain
brucesmom -- here too will be 40 on xmas
anna -- In our house we always have plumbing problems at Christmas--this year is no exception.
momma -- and christmas is the only time i like snow and it's suppose to rain
anna -- Roy's Asian friend gave him this candy popular in her country called "White Rabbit" and my daughter cracked her teeth on one. So, it is plumbing AND teeth this year.
brucesmom -- santa better bring his umbrella here
momma -- oh no anna !
brucesmom -- was the candy hard
anna -- The candy is like extra chewey taffy. I had a piece in my mouth for 1/2 hour before it dissolved.
brucesmom -- boy the kids at school are so wired right now fights everyday
brucesmom -- oh wow
anna -- I will be warning everyone about the WHite Rabbit. Roy cannot eat it. Guess I will give it to my son-in-law.
anna -- I am going to try to have my mom stay 2 nights with us.
momma -- how the cough assist going donna i sent for a cd that tells about it
brucesmom -- my sister, kids will be sleeping here xmas night
anna -- (speaking of wired and fights)
brucesmom -- it is working pretty good, he has been spliting alot of stuff out
anna -- The CD is helpful, but you just have to experiment with it. Many people use the manuel button, but we like the auto settings.
brucesmom -- ann how is your friend doing the one whos x died
brucesmom -- we have the cd but didnt even watch it, we use the auto setting
momma -- i think i will get on the phone tommroww and see if i can't get one for kent he has a cough now but not productive
anna -- Roy aspirated yesterday at chat time, so I used the cough assist to help him get it out. He spit out sticky stuff for the longest time. If it is sticky that means you need to give more fluids.
brucesmom -- you should diane
anna -- We had a nice memorial service for him. It is just so hard on them because of their mixed feelings.
brucesmom -- how were the boys
anna -- Yes Diane--but in the meantime try chest percussion and use the v-pap for coughing.
momma -- doctor was kinda abut head about it when i ask him he well if ya want to try i write script but acted like it would be a waste of time
brucesmom -- bruces bedsore is finally healing
momma -- he has the vest
anna -- The 2 older boys were doing better than the youngest, who needs a lot of extra attention now until he gets over the worst of his griefwork.
momma -- thats good donna
brucesmom -- boy it takes a long time for them to heal, when that heals he will problary get another one
anna -- Oh yah, I guess the vest will shake it loose very well.
brucesmom -- it never ends
anna -- I am certainly afraid of bedsores, but so far so good.
brucesmom -- they are not pretty
momma -- thats what i told the doctor we do breathing treatments do the vest to loosen what good is it if he can't bring it up?
brucesmom -- when you see one for the first time it is really scary
anna -- We use sheepskin to prevent bedsores. Medicaid will get them an airmattress if they spend more than 21 hours in bed a day (I was told).
anna -- Right Momma. And they should teach us caregivers how to use a stethoscope to see how the lungs are going.
brucesmom -- we have sheepskin and airmattress and he still gets them
momma -- medicaid pays for kent air mattress and he's only in bed for mabey 10 hrs
anna -- My son is able to tell me exactly which part of his lungs has the problem. Yesterday he said the problem was in his lower left lobe.
brucesmom -- anna i dont think that is true about air mattress we got an airmattress from medicaid when bruce was still in wheelchair all day
anna -- Medicaid would not get us one!
anna -- Well, I will try again then!
momma -- hmm
brucesmom -- i would try again
momma -- thats all ya can do
brucesmom -- dont let them tell you NO
anna -- OK, will renew the battle. Why do we have to fight so hard?
brucesmom -- you think they would rather give you an air mattress then to pay to treat bedsores
brucesmom -- dont know , but it does suck
brucesmom -- i used to be a mousey person, not no more
anna -- Right on. I was "shy" too before all this.
anna -- DMD made me more tolerant, as well as more belligerent.
brucesmom -- i hope bruce plays his new playstation games after xmas he hasnt played playstation or gone on the computer in about 2 weeks or more, he just lays there and watches TV
anna -- My son can no longer use his video game systems, but there are still plenty of games on the pc's to play that don't need coordination or strength.
momma -- my email address will be changing soon we got cable inter net but haven't changed yet
brucesmom -- tonight it was really wierd, earlier he was calling me mommy, so i went in his room to see what he wanted, and he wanted me to give him a kiss, he never does that, you have to fight with him to get a kiss or hug from him
anna -- The magic of Christmas!
brucesmom -- ok momma when you get it send it to me
brucesmom -- i made seven kinds of cookies for xmas
anna -- Let me know too Momma!
anna -- 7!
brucesmom -- yes 7
anna -- I made 1 kind today and that is it. Everyone trying to watch their weight here, as well as anyone I could give them to.
momma -- man i can't imagine kent not being able to play playstation he will be sad he plays every day
anna -- Got to go change batteries in Roy's cordless mouse.
brucesmom -- cut outs, oatmeal raisin, mexican wedding cakes, m & M, chocolate chip, peanut butter blossoms, chocolate Italian cookies and mint
profess -- {welcome profess}
brucesmom -- oh sorry 8
profess -- Hey, I am not a parent, but my friend has DMD
brucesmom -- hi
brucesmom -- how old is your friend
momma -- hi profess
profess -- 13
brucesmom -- how is he doing
momma -- how is he doing ?
anna -- Do you have any specific questions Profess?
profess -- He's still able to do alot more than the doctors said, after his spine surgery, He had scoliosis
anna -- Would your friend like to chat with others with DMD?
brucesmom -- thats good that he still does alot
profess -- He is not able to get on the computer
brucesmom -- when did he have the surgery
profess -- I don't have questions, i have done alot of research
anna -- My son is 25 with dmd and just graduated from college with a computer sci degree. There are many ways your friend could use the computer.
anna -- Guess I put a damper on the conversation! Sorry. My son is just going on the Wheelchair Gang chat now.
brucesmom -- oh well
brucesmom -- profess are you still there
profess -- {welcome profess}
anna -- Brucesmom, which cookie you made is your favorite?
profess -- sorry, my computer shutdown
anna -- Profess, it happens to us all.
brucesmom -- problary the mint, and peanut butter blossom
profess -- yeah, all the time for me
anna -- Mmmmmmm yum
profess -- I am starting a chat for those who have friends with MD
momma -- i want to make buceyes but usually don't have a lot of luck they fell apart last time i made them
anna -- OK Profess, why can't your friend use the computer, or did I get that wrong.
anna -- Starting a chat here?--that would be great.
profess -- His family doesn't get computer acess, they are poor, they don't get any help with equipment
brucesmom -- what state is he from
profess -- they payed for his wheelchair, he ran into the pool, his hand slipped, and he couldn't get it up in time
anna -- He uses it in school--or can he get to the library or your home to use the computer? With dmd they need all the technology they can get.
profess -- Texas
momma -- depending what state your in as far as help with medical equitment
profess -- he plays Video games, and watches TV
brucesmom -- is there an mda office near by
profess -- Yes, about an hour away
brucesmom -- maybe they can help or tell him who to call
momma -- same here profess clinic is hr away from us to
profess -- Where do you live?
profess -- Momma
momma -- ohio
brucesmom -- well pretty soon the chat will end so i would like to wish everyone a merry xmas
anna -- Well, you are a good friend to him to be so interested in his life--maybe you can find a way to help him. He can get on SSI and Medicaid unless his family makes to much money. If they do, he can get on it at age 18 when parent's income doesn't count.
profess -- well, is that too cold for your son?
brucesmom -- tonawanda NY near buffalo
anna -- I have relatives in Texas, but live in WA.
brucesmom -- i wish my sons friends were like you, alot of his friends have wen their way
momma -- yes it is very cold but were suippose to warm up to 40 on friday sounds balmy to me lol
anna -- Merry Christmas--as you appreciate your blessings remember God gave us special sons to love.
brucesmom -- amen
brucesmom -- good night all, good luck profess with your chat
momma -- good night
profess -- My friend is a blessing to me, he is my hero not the other way around
anna -- There is a reason for everything--we just may never know what these reasons are.
brucesmom -- profess are you male or female
anna -- All of our son's are heroes.
anna -- God Bless us Everyone. Goodnight and Good Christmas.
profess -- Male, my name throws people off, but it is in my friends honor, i want him to profess, and take the lord, his dad is athiest
momma -- night to all and happy holidays!
brucesmom -- you sound like a good friend
profess -- I try, we are starting fundraisers in our school, everything we can get our hands on!
profess -- gotta go!
profess -- {goodbye profess}