It's been a good week so far :) Zachary seems to be recovering now from his sinus infection. We withheld his immune suppressors this past week until the end of antibiotics. We started them again on Friday. It was another one of those decisions that is risky either way you go. It's either hold off on his arthritis meds and let the infection clear but risk more disease progression or it's letting the infection linger. I don't think I could handle him also having a 3-4 month sinus infection. I don't want him to go through what his sister just went through. My biggest concern at the moment is his hands. Kevin and I noticed that his hands look weirder now. Almost like the tops are all swollen but with a new little nodule-like things on the knuckle under each pointer finger. Kevin pointed out that Emily's nodules were hard so they may not be, but I remember hers being squishy. Then again, I've been wrong on a lot of things lately, so who's to say? I guess we'll find out at his next appointment in April (I think) if they are still there.
Well, so far Emily is actually doing pretty well! Yesterday marked her first day off of antibiotics and so far she's doing ok. Now we'll just hold our breath for a couple of days... Hopefully this sinus scraping did the trick. She sees the ENT in 2 weeks, just before going for her next round of medicines. I don't think that her pediatricians realize quite how many immune suppressors she is on, and what they do to her immune system. She was able to do a little work yesterday with her homebound teacher, and today she was able to spend the whole day at our local science museum for an Arthritis Foundation event.
We LOVE events like this. Not just because we are spending the day at a science museum, but also because we get to spend time with people that understand our world. It is like going home when we meet our arthritis families. I get so overwhelmed when there are many of us :) We never have enough time to all talk, but I just love everyone. We really have the best families.
I finally got to meet the Kelly behind RA Warrior! It was so good to meet her! She is so sweet in person. I think she made everyone tear up when she spoke. Two of our other friends also spoke, and did an amazing job. :) My son stole a few hearts when he went up to hand one friend tissues. My boy is a heart breaker. :) I love that little man. <3 All in all we had an amazing day. I am so happy that we had the opportunity to go without things going wrong. We really needed a happy day. And it was! A big thank you to the Arthritis Foundation for hosting such wonderful events. We know that most of the money raised for them goes to research and things to help the kids, like summer camp (which is HUGE) and the JA Conference. It is imperative that people realize that many of the breakthroughs in medicine have come because of the Arthritis Foundation. They have helped us a LOT. So we need to try to help them to better help not only our family, but many other families as well. That said, it is time to gear up for our fundraising for them! Our May
walk is coming up quickly! I will post here when I get our page up!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Saturday, February 18, 2012
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Zach definitely stole the hearts of many when he made that awesome gesture. Kids are wonderful! I am so glad we got a chance to see you again with the children. Happy to hear that Emily is doing better. They look good! I almost dislike saying those words because so many people think because you look good = you feel good, big misconception! Really happy to hear that they are doing well though. Keep us updated on those knuckles please. That worries me a lot. Prayers that your angels stay healthy!ReplyDelete