Hi all, Jack was home for a week from hospital but was so ill from the day he came home that he had to be admitted yesterday again.(after 13 hrs in A&E)The...
I'm so sorry to hear about Jack. I can't imagine what you must be going through. I will pray that today you will see improvement. I pray wisdom for his...
so sorry aisling. stay strong. we'll be thinking of you. louise ... From: aislingmcn To: nomidsyndrome@yahoogroups.com Sent: Wednesday, October 01, 2008 8:50...
Aisling, I just saw your post, and I have been thinking about your for days, and wish I had gotten to write sooner. I had finally gotten a moment to write...
Dear All, The online enrolment program to get info and try to enroll in the ACZ885 Novartis drug study is finally up online! Go to this link to get into the...
Dear All, Many people have been interested in the ACZ885 study, and here is the contact info that I have so far. Seth is still doing very well with NO fevers,...
Just a quick reminder to everyone that the art donations need to be received by Friday October 24th. Remember to include a picture of your child and a brief...
We are finishing ours this weekend Jennifer. ... From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of Jennifer Earnhart ...
Jennifer, Ours are done. Waiting for them to dry, will get them in the mail in the next few days. Kieran did a self portrait and Chloe did one showing what...
Hi there Jennifer, Our Art and some donated pieces are going in the post today in two different boxes.Look out for them...I'm sending them to 422 East Main ...
How's Jack today Aisling? Louise ... From: aislingmcn To: nomidsyndrome@yahoogroups.com Sent: Monday, October 06, 2008 7:57 PM Subject: [nomidsyndrome] re ART ...
Hi Louise and Everybody, Jack worsened by last Friday so his steroids had to be doubled so on 10mgs now on top of his anakinra (2mgs/kilo).His wrists were very...
i hope things improve for Jack soon. It is hard for the siblings, good for you getting Molly some help. Are you getting any support for yourself? Louise ... ...
Not enough support for myself to be honest besides the psychologist in the hospital.Would like to go to counselling but booked 3 times a while ago and had to...
Hi Aisling, so sorry to hear about jack, I'm not sure whether your Doctors will like this but Alex has had some very tuff times and his Doctor increased his...
Aisling, I am so sad to hear that jack is still suffering, and that Molly is having such a rough time too. Your heart must be breaking to be pulled in so many...
Jennifer and all, Thanks to all of you that are getting artwork done, and getting other artists work for this fundraiser. Maybe we all should take photos to...
Hi Kate,When Jack was on iv steroids he was on 25mgs 4 times daily as that is the equivalent to 5 mgs prednesol orally/via peg.It was doubled then to 10mgs per...
Hi Aisling, I'm sorry to think that what works for one child doesn't always work for the other ( especially with NOMID) I hope that they come up with something...
Dear Aisling, It must be so hard to have to face so many challenges and struggles from every direction for Jack's health, and it is hard to know what to do....
Aisling, Molly & Jack  I really feel for you all and am hearing a lot of what we have been through a few years ago.  Tilly went through a lot of times like...
Hi everyone, Thankyou for your overwhelming support! Jack is coping much better now since going on the higher dose of pred- his joints don't seem sore now and...
Also amazingly his haemoglobin dropped to 86 when he was bad last friday and yesterday it was back up to 100.He is on iron twice daily since birth and has had...
Aisling, I hope that Jack continues to improve and that you can get to GOSH as planned and that they can help him! So sorry that things are not going well...
Hey there Karen, I scheduled the appt in GOSH for that date because Molly has mid-term break then.I am bringing her and Jasmin for the first week,my fantastic...
Aisling, I hope all goes well with your trip, and I am so glad to hear you have someone to help. I too love to go to the hairdresser, but one gets desperate,...
Jennifer, Can I get the address again please? Thank you. ... From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of Jennifer...
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