So, I've been wanting to update my blog for weeks but I have been just so crazy busy that I haven't gotten to sit down at my computer and get it done. So here I sit, my husband is still at work and it's only Chicken and I at home and she's in her room since I've got the NASCAR Truck Race on, lol.
So lets see, last time I posted we were about to leave for our vacation. Oh, we had an amazing time in DC at the Juvenile Arthritis Conference. The kids got to see their friends and my husband and I got to learn so much more about this nasty illness attacking our baby's body. I also got to connect with some mom's I had meet on FB that I had never gotten to meet. Best of all, I got to hang with my favorite JA Mom. And heck, my husband even connected with a few dads. There was also another awesome thing, I LOVE NASCAR and at conference Peck Motorsports unveiled their Kids Get Arthritis Too truck to be run in the Camping World Truck Series. It is so awesome!!!!!! We had a really funny incident during Family Fun night, but I won't got there cause my husband is ready for it to die down, lol.
On our way home from conference my husband surprised the kids and I and took us to Hendrick's Motorsports. My favorite NASCAR driver is out of the Hendrick shop and because Sami was just so worn out from conference she had to use her wheelchair. The shop was wheelchair friendly, so that was awesome. We had a lot of fun touring the shop but the best was in the museum. The sweetest women run the museum and even though it was busy in there the women showed us all around and gave us the stories of all the cars, my favorite was they had Tom Cruise's car from Days of Thunder. But anyway, the one woman just fell in love with Sami so we told her Sami's story so she gave her a lug nut off of one of Dale Jr's cars, I thought it was too cool. Then when we got home home, I was looking over our receipts to see that she also gave us a Hero's Discount, I know it was because of Sami and I just thought that was so sweet.
Now to this week, it's been a busy week. Sami had Remicade on Tuesday and then on Wednesday she saw Dr. N, her Rheumy. I try to make Sami's appts at the end of the day so if I run long there isn't someone else waiting for him but this appt was in the middle of the day, which with all my notes I had from conference and all that has been going on with Sami, I knew I was going to be long but thank gosh Dr. N told me it was a slow day so I was ok. So as you have seen in past posts Sami rashes and all the time, she also just totally crashes and she runs fevers from out of nowhere and I have never understood why, another mom and I have always said that she acted like she was systemic but because of her eyes thought there was no way. Sami was diagnoses in 2009 as Poly with Uevitis and from what I have always read and heard at conference if a child has Uevitis they and not be Systemic. Well, Dr. N says that is totally FALSE, he has treated many kids that are Systemic and have Uevitis. So needles to say after going over everything he has changed her diagnosis to Systemic. I keep hearing I'm so sorry but you know, it's been a few days and I'm still at peace with it because now I understand why Sami does what she does and I will now know what to do to help her.
So now we have answers that we understand and that is awesome. I hope everyone has a great rest of the summer and I will talk to you all again later, I'm going to go finish watching the rest of the race. :-)