What a day! We met Congressman Bilirakis today. He was actually very "real" and down-to-Earth. That made me feel better about the meeting. He and his aide were very sweet, very welcoming. It was his idea to take pictures and he gave the little people coins that he had made. They had his name stamped on them. Pretty cool, really. He had no idea that kids got arthritis, too. I showed him a map that we had gotten from the JA Conference that shows the shortage of pediatric rheumatologists. I told him about the CARRA research group and the registry that they are creating. We discussed Emily's IV later in the day, and some of the medication options, as well as how few there are. It was a good visit. He said that he hasn't read the bill yet so he couldn't guarantee that it would pass or that he would support it, but he said that he's all about helping the children and he would read it today. He also has a friend that knows a lot about it that he was planning on speaking to. I know that he may still vote against it, but I feel that we may have an ally. He encouraged us to come back.
We had Emily's infusion scheduled for 1 PM. After visiting the congressman we dropped Zachary off at school, then went home for a quick lunch. By just shy of noon we were back out the door. We got to All Children's Hospital early and had a nice wait while they processed everything. Em was fine in the waiting room. The moment that she saw Leslie, the nurse that gave her the infusion bear, she freaked out. I hate when she gets like this. I can understand her fear but at times it's hard to deal with. She refused to get on the scale... ran & hid. It's a SCALE! Not a big monster. I know... it's a stall tactic. I'm trying to get through to her that even when you're scared you have to consider how your actions impact others and yourself. She wouldn't get weighed, wouldn't put the hospital band on, wouldn't let them get her temp or blood pressure. I can understand completely freaking over the needle, but when she's making it so hard on such nice nurses it makes me a bit upset. They are AMAZING there. They had Child Life come up to help calm her down and talk her through it. That was truly a gift. Kevin & I were both feeling stressed out, but they came with toys and compassion. They gave her lots of different choices, though not too many at one time. They talked, played, helped her through it. The poor kid was just a wreck. I know that after her first two or three doses she'll be like an old pro, but today was just dreadful. She kept trying to jerk as they were trying to get the needle in her. What pros they are! The team there really made things so much easier.
After the needle was in she calmed down. They had given her blow pens, so she busied herself using the blow pens on the dolls that they gave her to color. She also watched TV on their state-of-the-art TV's. They have regular TV, a selection of movies on demand, and even internet access on the TV's. They make sure that the kids have plenty to do. Thank God because we have 2 more infusions this month, then after that we will be going once a month.
It was wonderful to get home!!! I couldn't wait to get home. I also had the opportunity to speak to a mom of a child that was newly diagnosed tonight. It's always nice to do that. It's great to compare notes, but it's better to know that you are not alone. So few people truly understand what we're going through. People seriously underestimate arthritis; it just doesn't get the credit that it deserves, partially because it's invisible. Sad as that may be, it is true. People don't see that your child can't get out of bed in the mornings, or needs several baths a day because she's so stiff it's the only way that she can move. People don't see that she feels so bad so much of the time that she can't tell when she's sick. They can't see the days that she can't straighten out her leg, or get dressed by herself. They aren't the ones whose hearts are breaking as they watch their brave little people that have never done anything to hurt anyone, and yet they hurt probably more than you ever have. She told me the other day that she's already an old lady. I had to laugh because of the way that she said it, but you cry a little inside because you know that it's true, and it's not fair. And yet, it could be worse. We count our blessings, take one day at a time, try not to panic at each crisis. We focus on the positive, and find our strength through God. What more can we do?
*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!
Monday, September 13, 2010
The congressman & Orencia
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