LOL, things have been crazy, as always... we've moved, and had some important work done... I'm glad you are finally out here. I want to get together soon...
My friend John's removal service was this evening. It was a beautiful service, but it's impossible to believe that that really is John in that coffin, that he...
Hi I am new to your group. I have a 18 month old son names Stephen who was just diagnosed with DDEB, although we suspected since birth. Is there any one that...
It sounds like it is going to be a beautiful service, and procession. I am so sorry that you are having to go through this right now. The bickering amoungst...
Hi Liz. I have DDEB and 2 girls with DDEB. Anne~Marie is 4 years, and Heather is 10 months. The things I can suggest: Bandage as needed, no tape on the skin,...
Hi Misty, Well, the funeral procession was indeed rally beautiful, and went off without any adventure, which was expected, as John only had his horse two...
Hi Liz, welcome to the group. I'm Dee, from Ireland. I have EBS. Sorry I can't be of much help to you as I know little about DDEB. ... birth. ... does...
Thank you for responding. I have found that going without shoes is best but Stephen does OK with wide gym shoes that are a little bigger on him. We get the...
Well I got back on saturday from my hols only to find my internet was down............... I felt like I'd had my hands cut off. lol. Linnet, I'm so pleased...
Hey lady, Glad to hear your back! My Internet was in CA while I was still in WA 1000 miles away..lol! Kallista is doing much better here in CA.. few blisters,...
Member only would be good, but what's to prevent them from joining to get the access? Misty ... __________________________________ Do you Yahoo!? Yahoo!...
That's a problem I didn't incur(sp) See I am also a member of other eb groups in which you have to be a member to get archives and being that the other party...
Yea, I know. I would feel violated too! My new cell # for any and all is 916-792-7399 HUGZ Misty ... __________________________________ Do you Yahoo!? Yahoo!...
Oh geez, Linnet, I'm so sorry to hear this!! It's so hard to believe that something like that could happen, but... totally, go for it and make the archives...
OMG OMG OMG I just have to share the news. Anne~Marie has been approved for SSI, and I have the phone interview and prep next wed. They will tell me what i...
Sorry to hear about your troubles linnet, Ive no objections to this site being made a members only site, it looks like someone has already changed it. Rachelle...
Hi all I am sorry that I have not posted for a while but i have been busy trying to get ready for another trip to Lourdes, France. Most of you know that I went...
Oh wow, have a wonderful trip, and take care of yourself. I can't wait to hear how your trip goes :) Safe Journey Misty ... __________________________________ ...
Hello everyone...I just wanted to re-introduce myself...my name is Sally and I have an almost 1 year-old daughter w/DEB (TBD R or D)...I do read all the...
LOL, Welcome Back Sally. Good to hear that you have rediscovered us. :) It's been too quiet here of late, and I think we need to have a discussion topic... ...
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Colin's birthday Saturday September 13, 2003 All...
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Sep 12, 2003 10:40 pm
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Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Neal's birthday! Saturday September 13, 2003 All...
Yahoo! Reminder
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Sep 12, 2003 10:40 pm
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Yey Neeman birthday! Come to think of it, I'm not even sure if Neal is a member anymore :- / Oh well, happy birthday to him if he is. ... playstation 2...
... Happy 31st Colin. I hope your day is relaxing and beautiful! Misty __________________________________ Do you Yahoo!? Yahoo! SiteBuilder - Free, easy-to-use...
... Happy Birthday Neal. Enjoy the pubs, and have a drink on me man... Misty __________________________________ Do you Yahoo!? Yahoo! SiteBuilder - Free,...
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