Hey new member :) You're in! Sorry it may have taken some time to approve you... this place has been a bit dead (ok, very dead) lately. I'm guilty. Somehow I...
Hi Erin, What type of EB does the baby have? I can't offer you much advice personally, as I've never been around a baby with EB - just been one! There are...
Junctional Epidermolysis Bullosa with Pyloric Atresia she was 3 months old on the 14th, she is very uncomfortable. Thans again, Erin ... one! ... able ... if...
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Heather Raine Friday October 22,...
Yahoo! Reminder
reminders@...
Oct 21, 2004 10:41 pm
3686
Junctional EB would be a lot more severe than what I have had to deal with, in fact taking care of skin with Simplex and the more severe forms is practically...
Hi Erin, I had a niece who had Junctional EB and I know she had an Haberman feeder
for her drinks but to my knowledge she had a normal pacifier. At the time...
Hi Erin, I have just re read your email and realised your daughter has
Junctional with Pyloric atresia. My Neice Brogan also had the exact same
type. I have...
Trevor has JEb-H and we never were able to find a pacifier to work for him. The bottle nipple also ripped his mouth apart. We dropper feed him until a g-tube...
-thank ypu very much!!! They have tried the Haberman feeder with no luck. Love Erin -- In butterflychildren@yahoogroups.com, "Rachelle" <c.lively@b...> ... ...
-Tahnk you so much for the reply. The little girl that has this disorder is actually my daughters godfathers baby, she turned 3 months on the 14th. She is...
Hello - I just wanted to let people know there is help out here if you need EB supplies. Our goal is to help those with no insurance or anyone who is having...
Hello: I hope everyone had wonderful holidays the past few weeks and Happy New Year to all! I will be leaving and going out of the country on Jan 02, and be...
Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Brogans anniversary Friday February 4, 2005 12:00 pm - 1:00...
Yahoo! Reminder
reminders@...
Feb 4, 2005 10:41 am
3697
Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Brogan Monday March 28, 2005 12:00 am - 1:00...
Hi everyone, Sorry it's litteraly been years since I last post anything on this group, there's no excuse really I just been a lazy sod! Anyway I would...
Wow, that's really *gulp* thrilling, the idea of skydiving to raise funds and awareness for EB! As for me, I have always been scared of heights, so I wouldn't...
Gena
otm@...
Apr 29, 2005 11:26 am
3702
*eyes pop out* Hon, wow! I've checked this group for the first time since... um... I dunno, I don't stick around Yahoo much at all anymore either. I've been...
Hon, i just wanted to say, if no one else wants to be the moderator, I would be happy to. Glad to hear from you Hon. You're one of my heros. We too enjoyed...
It would be a good thing to have a mod who checks regularly... there are still spammers and the like appearing now and again, I guess! I know this group has...
Hi Holly and everyone else who reads this post, I made you a moderator Holly, I don't know when I will be back in Oklahoma it's been five years since I last...
For those of you who have used the Meplilex dressing range, you will know that it's one of the best dressing's currently available to cope with the type of...
BlankI just received a phone call from a very upset Marybeth Sheridan. She asked me to communicate this sad news to you. I'm so sorry to tell you all that,...
Gena
otm@...
May 18, 2005 4:24 pm
3708
To all... if this is a duplicate, I beg your pardon... I have been asked to pass this on, and I "blind-cc'd" any personal emails... Gena ... From:...
Gena
otm@...
May 19, 2005 2:06 am
3709
BlankI'm passing this along from Marybeth Sheridan, for any of you who can attend: The Funeral for Jennifer Deprisio will be Saturday May 28th in Melbourne...
Gena
otm@...
May 20, 2005 12:05 pm
3710
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Anne~Marie Thursday May 26, 2005 ...
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