Re: [JRA]Georgina

[Guest guest]

Georgina:Now I am thinking that I did miss the latest from Josh's rheumy appointment??? Can you fill us in?Thanks for your concern and your relief! We are extremely grateful and relieved. I am still very concerned over the drop in his diffusion capacity (normal is 80-100, his was 65 last year, now is 56 this year). But the other numbers on his pulmonary function testing looked fine. An early sign of pulmonary fibrosis is a drop in diffusion capacity, without the other numbers being affected. So for right now, they are thinking that it could be early pulmonary fibrosis related to the JAS. If it has progressed next February, when the chest CT and pulmonary function with diffusion capacity is rechecked, we will probably be looking at a bronchoscopy and lung biopsy. The treatment for pulmonary fibrosis is usually prednisone. But for right now, he is doing fine, lung-wise, and we are just focusing on that.

I hope that Josh is doing well. Give us an update when you can. We so appreciate all you do for us! and Rob 14 Spondy

On Fri, 09 Apr 2004 17:55:21 -1000 Georgina <gmckin@...> writes:

Hi ,I am so very relieved to learn that the results of Rob's tests came back negative. I can just imagine how concerned and worried you were, waiting to hear the results. I am so happy for you, that things worked out well. I think you've got enough on your plate, for now. That could have been devastating!I don't know what the heck happened. I wrote a big, long, message to you right before you guys were going away to Florida. After sensing some sadness from you, when you were telling us that Rob was going to be needing to take prednisone.For some reason, it never arrived. Did I learn my lesson, about clearing out my sent folder too quickly? Nope. The same thing happened the other day, when I was able to finally get online and send in a bunch of research postings I'd found. I also included another one of my several-paragraphs-long messages, written to give an update on Josh (after his last appt with the rheumatologist), to welcome all of our newest members, and to reply to several members' concerns. All at once. A sort of condensed version from one who has finally begun catching up with reading about what's been going on but not able, time-wise, to reply as often as I'd like to - to the recent posts. By the time I figured out that it had been lost in cyberspace, and already deleted from my sent file into the trash, I didn't have the time or energy to re-write. I think (but am not certain) that if someone phones us as we're clicking the send button, the mail disappears?!? Maybe? I don't know. It's just a theory. It's only ever happened about 3 or 4 times total, since going online way back in 1996.Well, I just wanted to send a cyber hug and let you know that I am so, so, happy about this news. Oh, and I was really excited about the scholarship to the AJAO too! WOW! (Isn't FACES great!!!) You and Rob are going to have such a great time!!!A loooong time ago you asked about a good site for photo storage. Um. I use a hewlett packard one. And a Snapfish one. Both free. The list one is so finicky these days, or I'd say post them here. I can't even hardly use it anymore. Maybe other people have other suggestions? There are so many to choose from, I guess it's just personal opinion.Okay. Better go. Have to pick up my Kayla from her friend's house so she can get ready for her youth group meeting tonight. Josh, meanwhile, is fast asleep upstairs. It's a rainy day here and the weather does seem to make that happen.Aloha,Georginasnooksmama@... wrote:> hello again everybody!> I am so relieved...Rob's tests for Wegener's granulomatosis and> polyarteritis are NEGATIVE!! WOO HOOOO!~!> Polyarteritis can be fatal, as can Wegener's, if untreated. Both are> dangerous diseases. So that was quite a weight off my shoulders. Neither> Rob nor my husband had any idea how serious the diseases were that we> were checking for...I felt it best to keep that from them...> I am feeling so blessed and so thankful that Rob doesn't have to worry> about those 2 nasty diagnoses!> So we are back to the decreased diffusion capacity being caused by the> ankylosing spondylitis, and to a lesser degree, the methotrexate...> and Rob 14 Spondy

[Guest guest]

Georgina:

It was quite evident the huge impact your list has made on so many lives.

Because of you, we all 'met' online and became great friends and family.

Because of you, we learned so much about the nuances of our children's

illnesses. Because of you, we have a kinship to help support us on good

days and bad. I hope so badly that I will get the opportunity to meet

you, Josh and Kayla someday. I don't know if I would be able to arrange

work time next year to go to AJAO, but if I do, I plan to go as a

volunteer.

Words cannot express how thankful I am for this list.

and Rob 15 Spondy

On Mon, 26 Jul 2004 22:35:53 -1000 Georgina <gmckin@...> writes:

Welcome home!!!

I am so thrilled to hear about everybody's experiences at the AJAO

Conference. Remember, no detail is too small. I, for one, can't wait for

the updates to start coming in. I hope you all know that even though I

wasn't able to be there in person, my thoughts were with all of you each

and every day. As I told Robbin, one of these days , Kayla, and

myself will have the opportunity to attend and we'll finally be able to

meet with our extended JRA family. It's something I very much look

forward to. For now, I'm just so happy that so many in our group have

been able to share in such a wonderful event.

Aloha,

Georgina

snooksmama@... wrote:

> Hello guys! I am terribly jet-lagged and sleep-deprived but had to drop

a

> note to everybody.

> AJAO was an incredible, emotional, experience for Rob and I. We got so

> much out of it! Not only did I receive so much information and talk

with

> so many parents of kids with spondylarthropathy and other forms of

> arthritis, but Rob was so glad to be able to have fun and talk with

other

> kids who are having the same feelings that he is.

> I have notes I took on many of the sessions and hopefully later this

week

> will be able to get them typed up and posted to the list.

> It was also so great to meet so many on the list who attended! I am

sure

> the list will be bombarded as everybody starts arriving home and are

> eager to share their experiences.

> I wish you all could have been there. I thought of all of you so often

> throughout the weekend! We thought in hindsight we should have made up

a

> handout about the JRA list to give out to parents interested in the

> incredible on-line support offered here. I know we spread it by word of

> mouth so don't be surprised, Georgina, if you get an onslaught of

> members!!

> It was so great to be with Becki and family, Uncle Rusty, Donna Fox,

> Donna Exley, Tree Sap, , AJ, Holly and family, Val and Robbie,

> and , Robbin and , Stacia and family, and getting to meet

> Ellie and Riley...if I left anyone out I apologize, I had 2 hours sleep

> last night and it took us 8 hours to get home.

> You'll hear more from me later in the week!!

> and Rob 15 Spondy

[Guest guest]

I second that ! You too:) I hope you both can attend next year. I

would love to meet you both and everyone on the list.

Take care.

Patty

[Guest guest]

DITTO! You run an awesome list and should be very proud!!!! WE LOVE YA!

and Rob 15 Spondy

On Fri, 15 Oct 2004 20:35:44 -0000 " staciar101 " <staciar@...>

writes:

Georgina,

Thank you for keeping this a super place that is both clean

uncluttered for our eyes and our computers!!! I love that about

this list and you are the reason. Continual kudos for all you do

for us.

Stacia and Hunter 8 systemic, iritis