To all: I believe that is one reason for Kevin Flanagan's database. Joanne has all the info on that. I know that Pat Furlong and her folks are interested in ...
ILuvMere@...
Apr 1, 2004 12:18 pm
12785
Thanks for the link. This is great news. I would really like to get my hands on the actual document. It would be years before my insurance got a copy of it....
We have two full-size Ford vans, one with a raised roof but not raised doors and the other with both a raised roof and doors. We custom ordered the second...
We have a GMC Safari van it is a little smaller than the larger vans we used to have, I wanted it because we live in the north and it is all wheel drive, and...
I guess to each person quality of live could be different. My son never wants to have a trach. He was even to the point of wanting to put that in his living...
Most DMDers I know with a trach can speak. My son feels just the opposite. He wants to live as long as possible and will switch from BiPAP to non-invasive...
Brian. It was great meeting you Monday night. I hope you found things very informative. I've been trying to open that CDC link all day, but have been...
Adele, I couldn't open it either so I asked CDC for information on Duchenne/becker Muscular dystrophy (now called DBMD). I got a whole list of research...
ILuvMere@...
Apr 1, 2004 10:31 pm
12792
i know many people with dmd and trach and all of ´em can talk. actually i know just one person who can´t talk but he has no dmd. well, his talking is a...
This link worked for me: http://www.cdc.gov/ncbddd/duchenne/MD%20STARNet%20Factsheet.pdf Andrea Gapko, Director Educational Support Services and Academic...
I recently was able to open it. I can send a copy of it to you. Adele ... From: ILuvMere@... [mailto:ILuvMere@...] Sent: Thursday, April 01, 2004 5:13...
Thank you Brian for the link. Also a belated thank you for the contact person here in Oregon. We spoke and I got the information I requested but still have...
MJ had a rough day. This morning woke at 4am wheezing, rattling, and really congested. She did a treatment at 4am, 7am, 10am and 1pm. Plus throughout the...
MJ, praying you will soon be feeling better. You have had enough illness for quite awhile. Hope you are well enough for vacation. take care and keep us posted...
i have a trache and I talk all the time and some say I say way to much. I have had a friend who had a trach and he has always talked. I have to walk my...
Thanks Andrea. Your address worked for me. How is Jacob? Carol...
ILuvMere@...
Apr 2, 2004 12:16 pm
12802
Thanks also Adele. I opened it this morning. Carol...
ILuvMere@...
Apr 2, 2004 12:16 pm
12803
Jacob's EF is 30-353%; Josef's is 15-20%. Dr. has recommended that Josef also go on Coumadin as a preventive measure. Andrea Gapko, Director Educational...
Symptoms are flank pain (in Jacob's case, pain in his lower left abdomen wrapping around to his back with occasional sharp stabbing pain in the kidney area in...
So sorry to hear about Jacob. I hope is doing better. Do you know what caused this problem?...
JoyceGlass@...
Apr 2, 2004 11:44 pm
12806
A blood clot, probably from the left ventricle or atrium of his heart. But why, no one seems to know. But his meds were changed around a lot in the past 6...
Jacob takes 1 dose of Metamucil in the AM and one in the PM. Worked until they put him on iron. Then we had to go to Ducolax--2 tabs at night and he was able...
Clear DayHello, Is anyone here planning on attending the Parent Project Regional Round Table in Deerfield IL on April 24. I'm a bit less then an hour from...
It would be cool for some of in the midwest who "know" each other from this and other lists to actually meet face-to-face. It's six hours for me, so don't...
No Diane. I wasn't even aware of this one. I was originally thinking of going to Cincinnati for the one in July, but then Jason started playing hockey this...
Clear DayI'm not going to go to Cincinnati either. Just to expensive for me after paying for someone to stay with the children. Fortionely this is a one day...
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