I posted a new pic.... check it out ;) It ain't the Dee you knew and loved! Kevin take a look so that I don't frighten you to death at the next board meeting...
3665
Rachelle
rash_1999_uk
Sep 2, 2004 3:20 pm
Thanks kevin, sorry I'm a bit late I've just got back from holiday. How's
Alice doing. Hope she's well. Rachelle ... From: butterflychildren@yahoogroups.com ...
3666
freddiem
Sep 2, 2004 6:28 pm
-nice shade deirde all you need now is some safety pins kevin -- In butterflychildren@yahoogroups.com, jadedgeneration ... and...
3667
freddiem
Sep 2, 2004 6:33 pm
-so far so good rachelle she is on thyroid replacement hormone and is not getting so tired now.we have a wedding to go to on saturday week so she is looking...
3668
jadedgeneration
Sep 2, 2004 6:51 pm
I'm two steps ahead of you Kevin - I've got a massive collection of safety pins, most of them are in my clothes but two of them were in my ear since June. I...
3669
RACHELLE
rash_1999_uk
Sep 6, 2004 11:17 am
Kevin I thought you might be intersted in this article I found on the net. Jonny's legacy One man's death from a rare skin disease has provided other sufferers...
3670
Lori Lyman
lorilyman
Sep 6, 2004 1:36 pm
By any chance, will this be broadcast in the US? I'd love to see it. Lori RACHELLE <c.lively@...> wrote: Kevin I thought you might be intersted...
3671
freddiem
Sep 6, 2004 6:27 pm
hi rachelle,i had heard from the debra ireland office that the programme was going to be shown again in september around the time of jonnys anniversary it is...
3672
freddiem
Sep 6, 2004 6:39 pm
-lori this is a programme which aired on a station called channel 4 in the uk and ireland.if a station in the us buys it then it will be on there.it is not...
3673
freddiem
Sep 6, 2004 6:44 pm
-have you given anymore thought to my suggestion about going to grafton street and posing for the tourists for a fee i,d say you would clean up lol kevin -- In...
3674
Lori Lyman
lorilyman
Sep 6, 2004 8:28 pm
Kevin, I read the article on it. It really sounded good and I wish I could see it. Oh well! What a completely unbelievable thing to do, to make a doc. about...
3675
jadedgeneration
Sep 9, 2004 9:43 pm
Well I'm not sure it would work on Grafton Street but I found my new home yesterday, definitely Templebar - no one stares when I walk around there. Even though...
3676
freddiem
Sep 10, 2004 8:48 pm
-- emma hangs around there on saturdays she goes to something called blast bands play there every week kevin - In butterflychildren@yahoogroups.com,...
3677
jadedgeneration
Sep 11, 2004 7:20 pm
I often go to watch the buskers. Some of them are very enjoyable. ... <no_reply@y...> ... you ... pins ... you ... at...
3678
Yahoo! Reminder
reminders@...
Sep 12, 2004 10:40 pm
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Neal's birthday! Monday September 13, 2004 All Day...
3679
Yahoo! Reminder
reminders@...
Sep 12, 2004 10:40 pm
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Colin's birthday Monday September 13, 2004 All Day...
3680
jadedgeneration
Oct 20, 2004 2:14 am
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...
3681
jaeriah03
Oct 20, 2004 1:54 pm
Good morning, and thank you for the warm welcome!! I'm sure I will learn a lot here! Have a great day!, Erin ... Somehow ... said ... I...
3682
jaeriah03
Oct 20, 2004 8:46 pm
Is the a pacifier made for infants with EB?...
3683
jadedgeneration
Oct 21, 2004 3:36 am
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...
3684
jaeriah03
Oct 21, 2004 4:41 pm
Junctional Epidermolysis Bullosa with Pyloric Atresia she was 3 months old on the 14th, she is very uncomfortable. Thans again, Erin ... one! ... able ... if...
3685
Yahoo! Reminder
reminders@...
Oct 21, 2004 10:41 pm
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Heather Raine Friday October 22,...
3686
jadedgeneration
Oct 22, 2004 8:04 pm
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...
3687
Rachelle
rash_1999_uk
Oct 22, 2004 8:29 pm
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...
3688
Rachelle
rash_1999_uk
Oct 22, 2004 9:26 pm
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...
3689
TheLutters
ernielutter
Oct 25, 2004 2:57 am
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...
3690
jaeriah03
Oct 26, 2004 3:51 pm
-thank ypu very much!!! They have tried the Haberman feeder with no luck. Love Erin -- In butterflychildren@yahoogroups.com, "Rachelle"; <c.lively@b...> ... ...
3691
jaeriah03
Oct 26, 2004 3:52 pm
Tahnk you ... deal ... I ... advice ... been ... be ... is...
3692
jaeriah03
Oct 26, 2004 3:58 pm
-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...
3694
rlnt04
lizanrich04
Dec 20, 2004 2:09 pm
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...
