12.28.2005
09:45 PM - 11:15 PM EDT
PARENTchat / ParentsofYoungAdultswithDMD

momma -- {welcome momma}
anna -- {welcome anna}
anna -- Hi Diane!
momma -- hello
anna -- Whassup?
anna -- Cold all gone?
momma -- yes kent got over his too i think zycam really helps!
anna -- Roy vomited from 0100 all Christmas day
momma -- oh no is he better now?
anna -- I think Zycam helps too, but the drs won't commit themselves to agree
anna -- Well, this seems to be a daycare bug from the baby.
brucesmom -- {welcome brucesmom}
anna -- I got it Thursday, Roy got it Sunday, Mom got it Tuesday, and today the baby's dad got it.
momma -- yea i got that impression i ask the pharmacist would say much about it either
anna -- Hi Donna!
momma -- hello donna
brucesmom -- hi anna hi diane
brucesmom -- sorry to hear everyone has been sick
anna -- So, Christmas we had to take turns sitting with Roy so he wouldn't aspirate. I still felt lousy, but my daughter helped me make dinner.
momma -- how are things at your house donna?
brucesmom -- how was everyones xmas
momma -- is roy still sick?
momma -- mine was very good how about yours?
anna -- Roy is still recovering. He was able to go to the big Seahawks/Ind. Colts game before it hit him.
brucesmom -- things are ok
brucesmom -- our xmas was good, but now we are all sad
brucesmom -- had to say goodbye to my sister, nieces and nephew
anna -- Roy is still weak today--wanted to go back to bed a few minutes ago and use vpap.
brucesmom -- i have been crying like a baby for two days
anna -- Sad because your relatives moved?
momma -- thats awesome my son would love to go to a pro game!
brucesmom -- yes
brucesmom -- they are leaving at 5 in the morning
brucesmom -- i called them tonight to say goodbye and i cried again
anna -- The game was his big Christmas present from my son-in-law, who is now vomiting on the day he needed to drive 7 hours back home!
brucesmom -- my mother stopped here after she left there and we both were crying
anna -- My daughter is next to fall, or anyone else we came in contact with. My hubby says he refuses to get sick.
anna -- It is so hard when people we love leave!
brucesmom -- i was so depressed today i took all the decorations down, but bruce asked me to leave the tree up until after new years, i said ok
momma -- thats what we do to i did take the balls off and left the lights and snowflakes on it.
brucesmom -- bruce is going to miss TJ (my nephew)
anna -- We have this fiberoptic tree that you can changew the color wheel for various holidays like Valentines.
brucesmom -- cool
brucesmom -- bruce wents to keep his rope lights in his room up all year and his garland
jbsmom -- {welcome jbsmom}
brucesmom -- after i finished taking the decorations down, i went shopping online
brucesmom -- stress shopping
anna -- Hi jbsmom!
brucesmom -- boy i went crazy
momma -- that sounds like a cool idea donna we all need a little sparkle in our life(garland)
jbsmom -- hello
momma -- hi jbsmom
anna -- But, the tree comes down--I refuse to have a Halloween or 4th of July tree!
jbsmom -- hello momma
momma -- how are things with you jbsmom?
momma -- lol anna
jbsmom -- Dr ordered a cough assist for Josh
brucesmom -- how old is josh
anna -- Cough assist is very helpful
jbsmom -- Josh is 25 will 26 in March
momma -- i called are dme supplier today thier trying to get kent a cough assist
anna -- My son just turned 25 jbs
jbsmom -- With all this mucus hopefully it will work
momma -- she waiting on a letter from dr to justify it to ins
brucesmom -- march what
brucesmom -- i hope he gets one momma
jbsmom -- The 17th St patty's day
brucesmom -- my son is march 18th \
jbsmom -- How old is he?
momma -- lot of march b days kent's on 27 th
brucesmom -- he will be 19
anna -- Jbs, are you familiar with Dr. Bach?? Does Josh use NIV or v-pap?
jbsmom -- My youngest son is the 28 of March
brucesmom -- bruce is not doing good with bipap
brucesmom -- march was a busy month
momma -- whats wrong with bipap donna?
brucesmom -- does your youngest have dmd
anna -- Bipap takes time so work into.
brucesmom -- he does not like wearing it
jbsmom -- I read the transcripts alot and saw what you said about Dr Bach. Josh is on a bi-pap at night and when he needs it during the day. No he does
brucesmom -- he has it on an hours and tells me to take it off
jbsmom -- No he doesn't have md
anna -- The "patient" HAS to be motivated to use bipap.
jbsmom -- With all the mucus Josh only feels comfortable on it
momma -- but if ya don't he can't get use to it kent just felt so much better but i guess our boys are all different
anna -- Two sites of interest: doctorbach.com and http://www.mdausa.org/publications/Quest/q105trach.cfm
anna -- Jbs, the cough assist will get that mucous out. Also, make sure to keep mucous thinned with hydration.
brucesmom -- i dont mean to change the subject, i got my gas bill today, i wanted to scream (536.00 for one month)
brucesmom -- last year my highest bill was 386.00
anna -- What temp do you keep your house? Is it a big home?
jbsmom -- Is it hard to use?
sarahbell -- {welcome sarahbell}
momma -- is that natural gas or propane donna?
brucesmom -- i keep it on 70 because of bruce
brucesmom -- natural
momma -- we have propane it's like 150 a galllon
brucesmom -- its not that big 1100 square feet
sarahbell -- hello
momma -- hi sarabell
anna -- .Hi Sarahbell
sarahbell -- hi momma
jbsmom -- hi sarabell
sarahbell -- hi anna
brucesmom -- now the heat is down to 68
sarahbell -- hi jb
anna -- We have a huge 2 story and use propane and it is fairly economical.
momma -- we keep ours at 70 -68@night
anna -- Sarabell, how are the "children"? (one is sort of too old to be called a child)
brucesmom -- our house isnt insulated very good
momma -- whats new with sarahbell?
anna -- We do the same Momma, plus I use an electrical heater in Roy's room and keep it closed up.
brucesmom -- they said our gas bills were going up 70% this year, and they did
sarahbell -- they are all great Abby just turned 21
anna -- Brucesmom, you need more insulation
momma -- same here a little heater during the day and kent has to wear gloves his hands just won't get warm
brucesmom -- i know, but it cost money
saa -- {welcome saa}
anna -- Was Abby able to return to the university?
anna -- Hi Saa
momma -- hi saa
sarahbell -- she is taking some classes online
saa -- hi
brucesmom -- do saa and sarahbell have boys with md
anna -- Roy cannot wear gloves, we invented special mittens with control stick hole when we were living on the cold side of WA for school.
sarahbell -- i have 2 girls with SMA
momma -- let me introduce myself i'm a dmd mom of a 19 yr old
saa -- well no but i have md
anna -- I am mom to a 25 y/o with dmd
brucesmom -- i am a mom with a 18 y/o with dmd
momma -- ok welcome
anna -- You are welcome here Saa even if not a dmd parent
jbsmom -- i'm a mom to a 25 y/o with DMD
saa -- if i can sit in tho?
brucesmom -- what form of md do you have saa?
anna -- Jbs, did your son go to college?
saa -- nemaline myopathy
sarahbell -- i have 2 with MD and 2 with out
jbsmom -- No started to then decide to take some time off.
anna -- Sarabell, did you just have the new baby? Boy or girl?
sarahbell -- boy October 1st
anna -- How does that affect you Saa?
momma -- how dose it affect you saa?
sarahbell -- Brock Alexander
anna -- Congratulations!!
brucesmom -- how old are your children sarahbell
saa -- main concern is respiratory..have to use a bipap most of the time now
momma -- how old and how long have you used bipap Saa?
sarahbell -- 21,3,2,almost 3 months
saa -- on my 3rd machine started in alril 99
saa -- april
brucesmom -- you have 3 little ones?
sarahbell -- yes
brucesmom -- oh wow
brucesmom -- they must keep you busy'
sarahbell -- very busy
brucesmom -- 2nd family?
anna -- Saa, please refer to the sites I gave earlier in the chat. You can pause the chat using the "click here to pause" above.
sarahbell -- i have help during the week though
saa -- im up for adoption if you want another lol j/k
sarahbell -- same family
brucesmom -- wow
anna -- My son uses a non-invasive vent while up. Much easier and more portable than being on bipap all the time.
brucesmom -- my daughter is 22 and son 18 i cant imagine a baby now
sarahbell -- just started young
momma -- what kind of vent does he use during the day anna?
sarahbell -- Abby helps a lot with Drake (2) keeps him busy by reading to him and playing with him
anna -- LTV 850 by Pulmonetics
saa -- i just use the same machine all the time when i need it
sarahbell -- 40
momma -- thanks anna just want to know all options
anna -- Jbs mom?
jbsmom -- What type of mask do u use with the Bipap? Josh has to use full face
saa -- oh and im 33 sorry i missed it earlier
anna -- Read the article from the Quest as mentioned below. The options for the NIV's are large and quiet or small and noisy.
saa -- the gel lite profile type.. the one that covers just the nose with a forehead spacer
jbsmom -- I was reading the article.
momma -- is your sons quiet anna?
anna -- My son alternates between a nasal mask and nasal pillows. We have tried at least 6 different interface systems for the bipap however.
sarahbell -- i'm blessed that my little guy is very calm and layed back
jbsmom -- Josh likes to open his mouth
anna -- My son has the LTV ("laptop vent")--small and noisy
momma -- same here anna couldn't find one that didn't make kents face sore
saa -- i used to use nasal pillows starting out til my nose got raw and hurt
brucesmom -- i had my three year old niece here for two days, boy she tired me out
anna -- brb
saa -- they make a chin strap you can use to close the mouth
brucesmom -- ok
momma -- kent uses a chin strap but his mouth still comes open some
jbsmom -- Josh too. I always say that's hte one muscle not affect
jbsmom -- the one
momma -- lol
jbsmom -- His nose is getting raw from his mask.
saa -- mda doesnt cover bipaps on the medical closet thing i had to get a new one last month and checked
saa -- go to a larger size maybe?
anna -- Alternate systems--they keep inventing new masks that fit better. For one kind I cut guaze "nose rings".
momma -- yea ya gotta be careful i wash kent mask daily and when he's not wearing it during the day i put antibiotic cream if he has a sore
sarahbell -- i don't think i could do it with out help they are a hand full
jbsmom -- I put a flex bandage on to protect it
saa -- i have more problems with it irratating my throat instead of the nose
jbsmom -- anna the quest publication has an error
jbsmom -- I'll try later
anna -- The non-invasive vent uses a mouthpiece and may save needing a trach for a few years. Also, more comfortable than bi-pap for daily use.
anna -- I cut and pasted it wrong?
anna -- Well, then go to the MDA Homepage and search for it there. I will go try it.
jbsmom -- I don't think so
jbsmom -- I'll look. Noninvasive venting will have to ask Dr about it
sarahbell -- Abby uses non-invasive vent and seems to do real well with it
anna -- I searched by typing in trach escape Quest in the searech box and it was the first article mentioned.
jbsmom -- Okay thanks
momma -- brb
anna -- Good Sarahbell--did your dr advocate it or did you hear about it elsewhere? (like from me?)
anna -- Jbs--your doc may not be an advocate, so do your research first.
jbsmom -- I will, thanks for the help.
momma -- back
anna -- Us parents can learn by chatting. I sure have.
sarahbell -- from you but then i asked the Dr about it and he thought it was a better choice then to have her on bipap all day
jbsmom -- Anything to make your sons life alittle bit easier
sarahbell -- i sure have learned a lot from chatting
anna -- Me too!
saa -- what was a better choice than using a bipap all day?
jbsmom -- Well I enjoyed chatting w/u all. I'll try to do this more often.
sarahbell -- non-invasive vent
anna -- Nice you came Jbs
saa -- ah ok
brucesmom -- bruce is using the cough assist with no arguing
jbsmom -- Have to go do Josh's vest Good night and thanks for making me feel welcomed
saa -- thx for letting me sit in see you all again later
saa -- {goodbye saa}
brucesmom -- but still giving hard time using bipap, what do you think is more important for them to use the cough assist, or bipap
anna -- {welcome anna}
anna -- They are for different things Donna--both needed
anna -- {goodbye anna}
jbsmom -- {goodbye jbsmom}
sarahbell -- i hear the baby talk to you all later
sarahbell -- {goodbye sarahbell}
momma -- both cause bipap keeps lungs inflated and cough assist to get stuff out!
anna -- Night Sarah--come again
brucesmom -- ok thanks for the info
brucesmom -- anybody have plans for new years eve
momma -- maybey dinner out?
brucesmom -- i am having my mother and her friend louise over and we are going to play cards, have shrimp and drink wine
anna -- Just to be healthy so we can go out to eat. I am not having a party and no one invited us to one.
brucesmom -- they are both spending the night
momma -- that sounds like a good plan donna!
anna -- Sounds fun! We often have friends over on New Year's eve and play Chickenfoot or Phase 10.
brucesmom -- i play phrase 10 but what is chickenfoot
brucesmom -- we are going to play canasta and then play dvd family fued game with bruce in his room for a while too
anna -- Chickenfoot is a domino game started and popular in Texas.
brucesmom -- ok
beckdildal -- {welcome beckdildal}
momma -- we use to stay at a holtel with all his family and have a big party but husband uses cpap kent uses bipap to much stuff to haul
momma -- hi beckdial
anna -- Hi Beck--love the wind here in WA??
beckdildal -- hello momma. hi anna:0)
anna -- Beck is from my area.
beckdildal -- the weather has been wild, wet and windy lately!
anna -- Well, 100 miles away.
beckdildal -- i learned how to play chickenfoot at my sister's church. they have a family night on fridays
momma -- speeking of weather it sure is bizzare here it was 40 and thunder storm last week it was about 20 mabey?
anna -- I have taught many foreign exchange students to play it
anna -- On holidays we call it Turkeyfoot
brucesmom -- here it is about 40 and rain all the snow is gone for now
brucesmom -- does beck have son with md
anna -- Beck, my grandbaby is like Typhoid Mary and spreading some sort of vomiting for 24 hours bug thruout our family.
beckdildal -- eeew anna, did you and Roy get it too?
anna -- My daughter, son-in-law, and baby have to travel to Spokane tomorrow and the Pass looks bad too.
anna -- Yes, Roy vomited all Christmas day and my elderly mom got it too. I also have it and my son-in-law has it today.
beckdildal -- brucesmom, i actually have a different form of md called FSHD. I'm just a visitor in this chat
anna -- We were talking about NIV and bi-pap interfaces. Have you found a mask you like Becky?
beckdildal -- NOT a fun way to spend the holidays
anna -- It was kind of interesting to see who would get it next....
beckdildal -- anna i've tried 2 different kinds so far. One is the nasal comfort gel mask by Respironics and the other is a fullface mask. I prefer the nasal mask.
beckdildal -- I wear mine with a chin strap because I tend to breathe through my mouth
momma -- that must be very common to mouth breath
anna -- It still amazes me that drs do not give parents all the breathing options for their sons!
momma -- some dr think theirs only one way need to get with the times?
brucesmom -- good night all and happy new year, talk to you next year bye
beckdildal -- momma, i have weak muscles around my lips and mouth so maybe that's why.
beckdildal -- goodnight brucesmom, have a Happy New yr
anna -- Or study the expert pulmonologists who particularily study the MD's.
momma -- my son and husband both are mouth breathers
anna -- Parents also need to choose their docs carefully after research.
momma -- night donna
brucesmom -- night
beckdildal -- momma, does you husband have sleep apnea?
anna -- Goodnight to all of you Encouragers on this unwanted journey. May 2006 show great research strides to cure these MDs.
beckdildal -- Is chat almost over anaa?
momma -- yea he uses c pap for sleep apnea
anna -- Any moment Becky. My son is at the WC Gang chat now.
momma -- night
momma -- HAPPY NEW YEAR!
beckdildal -- Take care and chat with you in the NEw YR