11.09.2005
09:45 PM - 11:15 PM EDT
SupportCenter / MyotonicChatGroup

paray -- {welcome paray}
robyn-g -- {welcome robyn-g}
robyn-g -- Hi Ray!
paray -- Good evening. Hi Robyn
paray -- How are things today?
robyn-g -- Things are pretty good, our attorney is working real hard for us to modify our parenting plan, so our family can get on with living instead of spending all our time and money battling the ex.
paray -- Would be nice to get that behind you.
robyn-g -- you should go to barnes and noble and amazon's web sites and read our comments regarding the cohen's book
paray -- I should do that. Good idea.
robyn-g -- I'm anxiously awaiting Peter Harper's book, even if it is a bit advanced for a lay person - I think I'll appreciate having it as a reference book.
robyn-g -- How is Ann doing? Does she chat much?
paray -- Ann is doing OK. She has never chatted.
paray -- On this chat. A few years ago there was an unofficial group mostly on the East Coast.
robyn-g -- Joe is not home from work yet. His job is sooo weird. He doesn't know what his start time is for the following day, until 3 p.m. of the current day - if he even has a start time. Otherwise we get phone calls bright and early telling us when they need him. It is seasonal - driving a cement mixer. Real good benefits too - which is a must for us. He never knows when his day will be over until they radio "wash it up".
elliebedelia -- {welcome elliebedelia}
robyn-g -- I meant what I said on the phone last night, about you being an encouragemnet/inspiration to me regarding how you care for Ann - your knowledge, etc.
paray -- Cement has been hard to get around here this year.
robyn-g -- Hi Ellie - so I saw you on the CMT chat. I accidently logged on.
paray -- Hi Ellie. Any snow yet?????
marciamellows -- {welcome marciamellows}
robyn-g -- Ellie-I've seen your pic on the web photoalbum. Where do you live? I see Ray's asking about snow.
paray -- Hi MM
robyn-g -- Hi Marcia - did you make it on easy tonight? or did you get bumped?
elliebedelia -- Hi everyone no snow yet but its raining and very cold it should change over any time befor morning
robyn-g -- Everyone ready for Thanksgiving? ha ha
elliebedelia -- robyn We live in the White Mountains of NH and where do you live?
robyn-g -- It hit me when I walked into Safeway and saw all the boxes of stuffing, canned pumpkin, cranberry sauce, etc.
robyn-g -- Ellie - I live in Washington State.
marciamellows -- Ellie, Did you find out any news about your sons baby?
robyn-g -- Did you all see baby Kayla's updated pictures on her carepage. Cute as a bug!
marciamellows -- I think that Baby Kayla came home yesterday.
robyn-g -- Marcia - how is Jeff? Please express to him that it was a pleasure meeting him at the conference.
marciamellows -- robyn, I saw the one in her Halloween costume. Are there others?
paray -- Hope that Kayla is getting along fine in her own surroundings.
vdoman -- {welcome vdoman}
marciamellows -- Jeff is doing very well, thank you.
marciamellows -- Hi corey.
vdoman -- Hi Everyone
robyn-g -- By the way - it was amazing how the conference played into our court situation regarding our girls. The guardian ad litem mentioned that the stepmother (me:) has researched the girls' disease and even recently attended a conference! Thanks to all who provided me with info. to make that happen
robyn-g -- Hi Corey
robyn-g -- Marcia - no - I was referring to the Halloween pic, too - "cute as a bug" (ladybug)
vdoman -- Hi Robyn
elliebedelia -- No marcia they are going for another ultrasound in the morning and the fluid test.
julie -- {welcome julie}
marciamellows -- robyn, that is really great how that worked out for you. It will be so nice when you can get this all behind you.
elliebedelia -- amniosenteseth??
robyn-g -- Ellie- let them know our thoughts and prayers are with them and please keep us posted.
robyn-g -- Hi Julie!
robyn-g -- Amniocentesis
marciamellows -- ellie, what did the first ultrasound show?
elliebedelia -- thenkyou robyn also for the spelling I knew you would know what I meant
barryc -- {welcome barryc}
vdoman -- Suzy had an Amnio with Kev 22 yrs ago
vdoman -- Hi Barry
robyn-g -- Hi Barry!
barryc -- Hi Corey, robyn, and gang...
marciamellows -- ug
paray -- Florida just blew in!!!!
robyn-g -- Corey - when was Suzy Diagnosed?
barryc -- Robyn,,,I just sent you the web site to order Acapella, not Rx needed,,, check your email
julie -- Hi all. How's the crew?
marciamellows -- Redheader once told me that if I get bumped I should say ug and push send. It worked!
robyn-g -- Barry - I already read it and replied - that was the site I went to - they told me "NO" not without a RX.
elliebedelia -- Well Jen started spotting so they took the ultra sound and could not detect a heatbeat but she was only 5 weeks along so last week same thing and it hadn`t grown since the week before. The technology is amazing. I didn`t think they would find a heartbeat anyway at that early stage but its been 24 yrs since I have been pregnant
paray -- Hey Barry Send it to me too
barryc -- ug... so now you are an indian, hey Marcia?
vdoman -- Me too Barry send the Acupella site to me
barryc -- paray...are you kidding? don't you have the site???? duh...
marciamellows -- Has anyone heard from Lisa and Jeff?
robyn-g -- Ray - Barry sent me the same link you sent - you know lets you place the order, and then they emailed me saying you need a RX. And, I followed up with a phone call - no acapella without an rX.
elliebedelia -- someone told me to click back when i get booted and that works too
rockcandy -- {welcome rockcandy}
jerisy -- {welcome jerisy}
barryc -- hi ms. SF
mississippi20 -- {welcome mississippi20}
robyn-g -- Hi Suzy.
vdoman -- Hi Jersy How is weather
barryc -- suzy... do you like rockcandy?
robyn-g -- Ok, I'm lost again. I need introductions (Mississippi20 & jerisy)
julie -- Hi suzy and jerisy.
jerisy -- Hi everyone... it has been a while. Hope eveyone is doing ok.
rockcandy -- hi robyn-g
barryc -- mississipippi... weren't you on another chat tonight? along with ellie?
vdoman -- mississippi20 Are you new to our family Please intro yourself
marciamellows -- Bette and Mark went on a walkathon last weekend. Bette was in the wheel chair and Mark was pushing her. They hit a bump, Bette, fell out of the chair, the chair fell on top of her, Mark fell on top of the chair and Bette broke a rib.
elliebedelia -- hi mississippi that is a long nick can we call you something for short?
robyn-g -- always count on humor from Vdoman, Paray, BarryC, and MM. That's why I look forward to Wednesday nights.
rockcandy -- hi julieand barry
elliebedelia -- barry I have never met mississippi before
jerisy -- Weather is San Fran is GORGEOUS> Warm and calm untill 3 pm and then BRRRRRRRR.
robyn-g -- Poor Bette - that's awful. Was it the walkathon that Lisa (6 y.o. daughter Katy) from the conference organized?
marciamellows -- robyn, jerisy is my sister-in-law, Jeff's sister. She lives in San Francisco. Missippi is new.
elliebedelia -- where did you see me barry? I was on cmt for awhile
paray -- Hi speed wheelchairs are dangerous!!
barryc -- jerisy and marcia are "related"... marcia, why don't you intro jerisy to Robyn... take it away, ms. LA
marciamellows -- missippi, are you new to our chat? Please introduce yourself. Do you or a family member have MMD?
vdoman -- Mark should not have been trying to win the race at Bettys expense LOL
julie -- That's okay ellie, I think we have someone new.
barryc -- yes, that was it ... cmt... what is that chat all about? I was on for a millisecond.
marciamellows -- I hope that Beete comes on tonight. She said that she was going to try.
barryc -- what happened to Bette?
robyn-g -- Barry - when I got on the cmt chat it was about Baklava
elliebedelia -- well cmt is another form of md and I was early for this chat so i went there
elliebedelia -- they are good folk
marciamellows -- Yes, that is the same walkathon. In fact, Lisa was right near them when it happened and was a big help.
vdoman -- Bette broke a rib Mark tried to race here in the wheelchair
ladyrani -- {welcome ladyrani}
vdoman -- Hi Lady how have you been
robyn-g -- Hi ladyrani - don't think we've met?
elliebedelia -- yes Julie maybe we have a peeping tom??
julie -- Hi lady.
julie -- Hi lady.
vdoman -- How is Jeff doing Lady
rockcandy -- hi lady
ladyrani -- recovering from emergency surgery...finally back at work
elliebedelia -- hi lady glad your here.
marciamellows -- Well, well, well, ladyrano. How the heck are you and Barton doing?
jerisy -- What time does the Chat offically start. I always think I am on time but you all got here early.
elliebedelia -- hey marcia what about mississippi?
marciamellows -- robyn, ladyrani is an old time chatter, but has not been on for quite a while.
ladyrani -- I spoke with Ruth a couple of days ago. They are hoping that Jeff makes it to Christmas.
julie -- What happened to you?Lady.
marciamellows -- lady, is Jeff in the hospital or home?
ladyrani -- Barton's pain level is skyrocketting. Any movement hurts. He has clinic on Monday. Hopefully Dr. Randall will have some suggestions.
ladyrani -- Jeff is at home. They are getting help from hospice.
vdoman -- How is Ruth coping, Jeff has sure gone downhill fast
marciamellows -- jerisy, the chat officially begins at 5:45 western time and officially ends a 7:15 western time.
ladyrani -- I had a hernia that decided to strangulate and impact my bowel. Surgery went well but I developed a seroma. Hopefully it has finally stopped draining. Surgery was Sept. 7
elliebedelia -- lady when my dad got into such pain they finally put a pain patch on him but I didn`t know what was in it I know they put morphine in it to kill him though at last against our will
marciamellows -- Mississippi, are you still on? If so we would love an introduction.
ladyrani -- Ruth is not coping well at all. Jeff had been on a plateau and she just assumed/hoped it would last longer.
marciamellows -- lady was that an umbilica hernia?
ladyrani -- The other day Barton took 2 tylenol 4"s followed by a 4 asprin chaser.
elliebedelia -- my son had a herniated hernia and had to have immediate surgery in the middle of the night
ladyrani -- I assume it was umbilica. They used the old incision from 10 years ago and only had to add on a couple more inches.
vdoman -- That is nothing Suzy is taking .5 grams of methodone for pain
julie -- That doesn't sound like fun. I hope things are better. You have so much to contain with as it is, Lady.
robyn-g -- Is pain common? what types of pain? associated with the MMD?
jerisy -- Thank you MM. By the by, I get this weeks chat reminder. How strange. Hope all is well.
ladyrani -- He also takes 2400 mg neurontin and 16 mg zanaflex.
marciamellows -- Jerisy, are you enjoying your new computer and learning about all of the whistles and bells?
ladyrani -- muscle pain
elliebedelia -- mississippi we would like to know about you do you have mmd? that is what this chat is all about
vdoman -- Pain is very common Suzy gets severe pain in here legs
rockcandy -- I get leg pain usually frm the knees down to my tes not fun
ladyrani -- Ellie, my surgery was in the middle of the nite, too. I had gone to work that morning. Around 9:30 I started feeling strange. When I looked at the clock again it was 11. No idea what happened to the time. Had my son get me. Didn't think driving was wise.
jerisy -- MM...The new Imac os10 is very pretty but I need to learn a lot more to take advantage of its attributes. Bothcomputers are set up till I getweaned. TOOT TOOT
elliebedelia -- yes I have leg pain and rls and also in my neck and shoulders
vdoman -- Jersy you need to give your sis in law your old computer anything would be an improvement for MM
paray -- Mississippi is gone to the gulf!!
marciamellows -- Next week the subject for the chat is Congenital MMD, but please do NOT stay away if you do not have anyone in your family who is congenital. We really would like everyone to still be here. There is a lot we can learn from one another.
rockcandy -- MM dort lt corey make ffun of yor computer
jerisy -- VDO, maybe after I get weaned
barryc -- fortunately neither Terry nor Julie have a lot of pain... about the worse I can remember was a pain spell in Julie's chest (muscles got very tight)...I thought she was having a heart attack...800 Mg Motrin relieved the pain... never happened again
barryc -- paray... love your quip re: mississipi!
elliebedelia -- that must have been frightening barry
barryc -- so paray...what is the web site for Acapella/without RX?
marciamellows -- ug
robyn-g -- Ok - I'm sorr for so many questions, but if some sedatives and muscle relaxers are risky for mmd patients (according to info. at the conference), what about things like motrin?
julie -- It was in my back and it was the worse pain I ever had. I, too , thought it was a heast attack.
barryc -- ug... love that word... so simple, unfettered,and afficionado light...
marciamellows -- I just made reservations for Las Vegas for December for Jeff and mine 40th wedding anniversary.
rockcandy -- marcia dont let corey make fun of your computer
paray -- Barry...I though that you used the one that I gave you. Same as Robyn
jerisy -- Barry... went to Chicago last week and was reading Terrys book at the airport. A man came up to me and said he had mmd and asked to see the book which I shared. Getting it out there to increase awareness powerful tool.
ladyrani -- Jerisy, next time you are in Chicago, call. We are in one of the burbs.
marciamellows -- jerisy, you met a man at the airport with MMD?
barryc -- thanx jerisy...that was so kind of you... both amazon.com and barnesandnoble.com have the book, and some great recos...thanx to robyn, corey, maria, and robyn's kids! many thanx to all
vdoman -- MM was Vegas YOUR choice for your 40th or Jeff's
paray -- Can people with MMD play the slots???
marciamellows -- barry, did you receive Jeff's comments on the book?
barryc -- yes, paray... I ordered it without a RX...soooo will need to check out the web site...
paray -- Where is Kodak when we need him??
marciamellows -- What do you think vdoman? Jeff knows better t han to mess with me and Las Vegas!
barryc -- marcia... I got your comments (now on barnesandnoble)... did Jeff also send comments?
robyn-g -- Jerisy - So, How'd that conversation (at the airport) start?
rockcandy -- I play the slots also black jack
jerisy -- Ladyrani... I sure will. WOW I was so surprised at the sophistication and beauty of the architecture. Was cold. Had to borrow Daughters winter coat. Only difference I could see from Calif. there were no paper toilet seat covers in the public bathrooms. It is a law in Calif.covers
vdoman -- Ray you do not need to pull handles anymore just push buttons, HANDICAP FRIENDL! They will take anyones money
marciamellows -- I play the slots (video poker). Jeff plays the tables.
robyn-g -- The comments take longer to post on Barnes and nobles site, than on amazon's. Amazon's is instant B&N takes a few business days.
barryc -- paray.. people with MMD play the slots in PA... just go off to NJ right?
ladyrani -- Sheesh...you thought last week was cold??? Don't even consider coming in the winter.
paray -- We take the bus to Atlantic City.
robyn-g -- I need to refresh my screen. Every comment just turned red. It'll show that I am logging back on.
julie -- I like blackjack myself. I just downloaded texas holdem pcker on my computer.
robyn-g -- {welcome robyn-g}
jerisy -- Robin... the gentleman was sitting across from me and noticed the cover. When the seat next to me was vacated he changed seats and started chatting. I am a good chatter and it seemed he just needed a stranger to listen.
elliebedelia -- how come everything change to red print here???
marciamellows -- lady, are you still working and having insurance problems covering your meds?
elliebedelia -- that just happened to me too robyn
robyn-g -- jerisy - wow that is quite amazing to me - how you guys connected. I love chatting on planes - it's hard for me to sit next to people who are not into having conversations.
barryc -- now IF WE UNLEASED julie at Vegas, with a load of money... we would be waiting forever for her to finish playing... she can make bet and bet and bet...and she loves to chat... great combo for slowing down the losing propositions of gambling.
marciamellows -- Someone mentioned Motrin a while back. I do not have MMD and I have a cast iron stomach. Motrin is the only medication that I have found so far that upsets my stomach even if I take it with food.
ladyrani -- still working. current insurance problem is relating to wheelchair. they won't cover it.
jerisy -- Lady .... I am a real wuss when it comes to the cold. No way. We went to the SOFA2005 International Art show at the Navy Pier. I was really impressed with the city.
ladyrani -- we will be playing catch up with doctors bills..I only had 78 hours of sick time and was gone 6-1/2 weeks.
barryc -- we love Motrin... I can take it without food, but I do eat something... terry and julie do fine with motrin
rockcandy -- gotbumpd
vdoman -- {welcome vdoman}
ladyrani -- Barton is eligible for Medicare the first of the year. Hopefully they will cover a wheelchair.
elliebedelia -- I take advil and sometimes aleve for pain
vdoman -- Got bumped
barryc -- lady...doesn't MDA cover a wheelchair? I know they will make used ones available at no charge.
julie -- MM, we so motrin for pain and thank god we are tp tolerate it wiyh no problem.
marciamellows -- Is Mississippi still on?
ladyrani -- they will cover at most $2000. And the local chapter does not have a supply closet.
elliebedelia -- I didn`t see him log out marcia
rockcandy -- kein is playing poker on his computer
vdoman -- mississippi is off chat
barryc -- I think Julie comes eligible for Medicare, too...in about March of next year...
jerisy -- How do you get on to Baby Kailas care page?
elliebedelia -- why do people come on this chat and then don`t chat??
robyn-g -- Conference stuff again - anyone of you where a medical bracelet, necklace etc. anyone carry a "care card" you know something that cautions doctors about anasthesia, etc. I'm trying to think of a practical way to create a "care card", preferrably small, laminated, but one that can be "on" the girls at all times. ideas?
marciamellows -- I just talked to Bette. She says that the worst part is getting out of bed.
babykayla -- {welcome babykayla}
rockcandy -- hin baby
vdoman -- Hi Lisa WELCOME HOME to Kayla and you
robyn-g -- jerisy - if Ray has your email address you can count on him to email you the info. He is the "link" master.
babykayla -- hi everyone
babykayla -- Thanks!
julie -- Hi lisa. How's kayla?
babykayla -- It's so great to be home with Kayla
robyn-g -- Hi babykayla - saw kayla's pic, "cute as a bug"
marciamellows -- Hi Lisa, WELCOME HOME!!!!!!
babykayla -- She is doing so well
jerisy -- Who is Ray and how do I get him my address
babykayla -- she's starting to finally track us
marciamellows -- Robyn, Jeff wears a medica alert necklace.
babykayla -- and was awake almost all day yesterday
robyn-g -- Lisa - we're so happy for you! Are you getting sleep?
barryc -- marcia... please let Bette know we all are thinking about her, and miss her. Bad enought to have all the problems of MMD... broken rib, is just one pain in the --- chest
elliebedelia -- Hi babykayla bring us up to date on all the exciting news
babykayla -- oh no!
marciamellows -- jerisy, Ray is paray. I can send you the websire. I promised to send it to Alice also and I forgot.
jerisy -- Home Sweet Home. How happy you all must be to have Kayla with you. Bravo
barryc -- bravo, bravo, and bravo
babykayla -- it's really great being home
jerisy -- Send me the web site MM
babykayla -- Kayla is adjusting really well
pres -- {welcome pres}
marciamellows -- Not only to have Kayla home, but to seleep in your own bed and not eat hospital food!
barryc -- what love can do..
rockcandy -- hi pre
rockcandy -- hi pres
julie -- How is Jeff adjusting to having a baby in the house, Lisa?
marciamellows -- Welcome pres
robyn-g -- Hi pres, welcome back. How are you doing?
pres -- Hi everyone
babykayla -- sorry that I missed the chat but we got caught up working with a nurse
marciamellows -- How are your dogs and cats adjusting to Kayla? Not too jealous I hope.
pres -- I am doing ok
elliebedelia -- hi pres
julie -- Hi pres.
marciamellows -- Lisa, do you have all of your nursing staff set up for 16 hours aday yet?
jerisy -- Goodnight from the Blue State. See you all next week. Have a good one.
elliebedelia -- its 9:46 in NH and someone is getting tired
jerisy -- {goodbye jerisy}
julie -- Nite nite. ellie.
babykayla -- hi julie. Jeff is doing really well. His brother and nieces are here helping. He and his brother are wiring Kayla's room for all of the extra equipment.
paray -- Ug Ug Have to get my screen to refresh. LOL
barryc -- I had a busy day, fighting a cold, along with seeing a client... soooo until next week gang... marcia, hit the lottery or do something to send us all to Hawaii for a MDD reunion!
robyn-g -- Janelle (13) is wondering if their is a "kid" chat for MMD or just MD patients.
babykayla -- marcia, yes! we finally got the coverage
barryc -- ug ug, and double ugs.. goodnight
rockcandy -- bye barry
barryc -- {goodbye barryc}
elliebedelia -- nite julie and everyone else its past my bedtime goodnight from the White Mountains come ski with me LOL
elliebedelia -- there is the wheel chair gang and I think kids chat you can check the chat calendar robyn
rockcandy -- ellie I cant ski any more goodx nitre
ladyrani -- well, gang, I am going to run. I am falling asleep at the keys. Nite all
julie -- I think I will sign off as well. time for bed.
marciamellows -- I personally do not know of a "kid" chat for MMD, but I think that it would be a fabulous idea! We do have some other young people in our group.
vdoman -- robyn-g Kevin might try to chat with Janelle I will help him
julie -- {goodbye julie}
elliebedelia -- well rock I never did ski
rockcandy -- nite julie
marciamellows -- vdoman, maybe strawberrys kids would join them.
elliebedelia -- i did cross country ski some but more on my but than on my feet, LOL
elliebedelia -- {goodbye elliebedelia}
rockcandy -- im going to go good nite everyone
marciamellows -- lady, please join us again soon.
babykayla -- so who is left?
babykayla -- seems like everyone left us
robyn-g -- I'm still here, Lisa.
marciamellows -- Don't forget that everyone should join us next week even though the topic is congenital.
babykayla -- hi robyn
rockcandy -- {goodbye rockcandy}
marciamellows -- I'm still here. Who else is still here?
babykayla -- how are you doing tonight?
pres -- {goodbye pres}
pres -- {welcome pres}
marciamellows -- lisa, I would like to hear more about Kayla. Is she able to cry and make sounds with the trach? Please excuse my ignorance.
babykayla -- Hi marcia. She has a small leak but otherwise doesn't make any sounds
babykayla -- I have never heard her cry
babykayla -- :(
marciamellows -- Is she breast feeding at all or solely the feeding tube?
paray -- Ann uses a speaker valve on her trach tube to talk. Works good.
babykayla -- i think I got signed off
marciamellows -- Robyn, does Joe or either of your daughters wear a medica alert? You were asking something about that earlier in the chat.
babykayla -- hi ray!
babykayla -- how does that work?
marciamellows -- paray, Ed does not use his speaker valve because he is afraid of aspiration.
robyn-g -- I bought bracelets for the girls last year. One of them lost hers. The other lost the medic alert charm on hers. I had Myotonic Muscular Dystrophy engraved on the back.
juniexoxo -- {welcome juniexoxo}
juniexoxo -- Hi all
babykayla -- marcia, what do you look for to know that he aspirated? I need to keep an eye on Kayla since her swallowing isn't that efficient
paray -- It is a valve that lets the air in but closes when exhaling to direct the air past the vocal cords. Same thing as putting your finger over the trach. Doesn't work with the vent, only when she is not on the vent.
babykayla -- Marcia, Kayla is breastfeeding a little. Usually about 15 minutes is her max. She took 35 ml's from a bottle yesterday.
robyn-g -- Hi juniexoxo - we haven't met yet? my hubby and two daughters (step)have mmd.
juniexoxo -- hi robyn...my sister has mmd
marciamellows -- Hi junie. Refresh my memory. Isn't it your sister who has MMD?
babykayla -- hi juniexoxo, my daughter Kayla (3 months old) was diagnosed with CMMD recently.
juniexoxo -- yes she does.. havent been on in awhile.
marciamellows -- Lisa, I think that paray or Alice could better answer your question about aspiration. I know that Alice knows right away when Ed has aspirated.
paray -- babykayla..Watch for dark colored mucus. That could be a sign of infection caused by aspiration.
juniexoxo -- and if she is on a pulse oximeter her sats will drop
babykayla -- thanks paray. How is Ann?
babykayla -- junie, how old is your sister?
marciamellows -- Paray, Jeff's coughing has stopped as suddenly as it started and we are getting sleep again. I did take him to the pulmonologist and they are going to do breathing tests to compare to last years.
paray -- MM Aspiration is when food or liquids leak into the airway. You have to suction to get it out.
juniexoxo -- 47 years old
babykayla -- when was she diagnosed?
juniexoxo -- about 5years ago
juniexoxo -- still not excepting it very well...
juniexoxo -- she doesnt want to admit to her limitations
marciamellows -- paray, I know what aspiration is, but do not know what to look for when a trach is involved.
paray -- MM..Jeff probably just had a mucus buildup
juniexoxo -- and i think she doesnt come in here because she cant accept what her future might be.
juniexoxo -- MM was your husband trached
babykayla -- junie, that's tough. I'm sure it must be difficult.
babykayla -- is there anyone else in the family who has MMD?
marciamellows -- No, Jeff has not been trached as of yet. Hopefully, will not need it for a long time if ever.
robyn-g -- junie - it's awesome that you are here. some day she'll appreciate that. I know for me, having my sister's support made all the difference when I attended the conference a few weeks ago.
juniexoxo -- very difficult..and her husband left her after her son went to college..he ldidnt want to take care of her anymore
juniexoxo -- thanks robyn..
juniexoxo -- and no one else has it....she is actually my step sister
babykayla -- junie, that is aweful. What happened to 'in sickness and in health'? Ugh, that's frustrating!
robyn-g -- junie - that's awful. When my hubby was diagnosed 10 years ago (he's 39 , now), his wife at the time said "I'm too young to be pushing anybody" we later found out that both of their daughters have it. The girls now live with us.
juniexoxo -- yep but she is doing ok now.. he just has to pay thru the nose....
marciamellows -- robyn, the girls are so lucky to have you in their lives.
juniexoxo -- the joke is on him...to the tune of 6000 a month.
paray -- MM.. With a trach the mucus collects in the canula and then we either change the canula or suction. Again aspiration will show up in the mucus
babykayla -- wow, that's great
juniexoxo -- yo are special robyn....
babykayla -- there is a mom in our area who has MMD and keeps having babies.
robyn-g -- Thanks Marcia - keep my other kids in mind too, please- the whole situation is challenging, but dealing with the ex is more challenging than the MMD itself. We're all tired and looking for some legal relief soon.
juniexoxo -- its very hard on me because she does need alot of help and i have small children...
babykayla -- and has them taken away.
juniexoxo -- WHAT
babykayla -- there is an amazing foster mom who keeps adopting them
juniexoxo -- she had to be