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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Monday, March 14, 2011

What a Weekend!

Our weekend started out with our first ever "Kid's Rheum" event. Since signing up, all of the events have been too far away for us to attend. So when I saw that this one was less than an hour away AND at a Children's Museum, I was pretty excited! So were the kids :) They had a blast playing with all the other kids at the museum. The grown ups had to sit and listen to speakers. I would have rather been playing but oh well. We heard from  a local pediatric rheumatologist and a psychologist that specializes in chronic pain management. They both spoke briefly and then we were able to ask questions. I asked, "Why does my daughter shut down and not want to talk about her JA and why does she deny any pain and or discomfort when it's so obvious that she IS in pain or uncomfortable?" They both said that unfortunately, this will likely only get worse as she gets older. It will be helpful to get her around other kids like herself so she gets a better understanding that she is NOT alone. Also to approach it like this, "Jenna, I know that you don't want to bother us with what's bothering you, but understand please that it isn't a bother to us. We want to help." Then give her options for how to deal with whatever it is, therefore giving her some control. It's worth a shot.

Then on Sunday morning we were off to South Carolina to meet the folks helping us to get to the JA Conference! I was so excited, eager, anxious all in one. We weer also exhausted due to being out late at the museum/event and thanks to daylight savings. Oh, and Daddy worked all night, but it's all good. They are such a great group of people with amazing hearts. They all welcomed us with open arms. When we were introduced I tried to thank them but 1) words will never be enough thanks for this incredible gift and 2) I got choked up and I hate that. It's still so incredible to me that our prayers of needing help, plus their prayers of needing someone to help brought all of this together!
I was planning on depositing the funds this morning so that I could get us registered and book our hotel room. BUT, Bean has a fever, an earache, a headache, has been asleep most of the morning and now her breathing doesn't sound right :( We have an 11:15 appointment with her regular ped so I figure we'll hit the bank then and I'll register and book later this afternoon. Hopefully we can get this kid feeling better. She had such a GREAT weekend! Stinks to start the week like this.

1 comment:

Deetipton said...

UGH on Jenna getting sick! :( I'm so sorry. Doesn't it figure that after such a great time they always seem to get sick??? I hope she's feeling better fast.

Also, Emily was exactly the same way, but now she often tells me when she hurts. It may just be that she doesn't know how to say it. I know that sounds weird, but it is often true. I hope that overall things are going well. I can't wait to hear about your upcoming Duke appointment!!! I'm very excited about that :) I hope it goes well. Miss you!