Let me start by saying that I am completely exhausted- like, falling asleep in my chair tired. However, I promised an update and I don't really see any time tomorrow for it, so forgive me if this doesn't fully make sense.
I took Zach to school this morning, leaving Emily at home. I had figured since our drive is over an hour to get to her rheumy and school doesn't start until almost ten it didn't make sense to take Em to school. She would be there an hour and miss lunch. We're generally at the doctor's for HOURS. Sometimes outside in the waiting room for 3-4 hours before we even get into a room. So, that was the plan. I had just gotten back home when Em's teacher called. Apparently the district decided to send people to evaluate her writing, but had neglected to tell anyone. Well, I'm all for anything that could help so we rushed back to the school and had a wonderful meeting. Now, she is still whiny lately and she is shy with people she doesn't know. She had a little meltdown, but it passed quickly enough. I explained that she could either help the people that are there to help her or I'm leaving the room. They brought a wide array of pencil grippers. It was amazing, actually. The lady, Patsy, asked questions and befriended Emily while helping her to pick grippers while the man, Mr. Roberts, was watching how she held each pencil. By watching her hand position and gaining her feedback they decided on 2 different grippers for her to use in school. They also evaluated her typing skills. This allows them to decide on a program that is right for her to help her learn typing. With this she can use assistive devices on the FCAT. He also massaged her wrists and was amazed at the tension in her back. Touching her back is (to me) like touching the back of a little elderly person. All stiff and tense. That meeting went so well! He told me that he can see the scleroderma in her wrists and hands. This PT actually knew about her conditions. He understood what they are, not just what they do. I'm always happy to have a medical conversation with anyone that has a clue. :) At the end of the meeting we rushed out to head to All Children's.
We got to ACH at 12:30- just in time. We signed in and ran to the cafeteria to grab her some lunch. I'm glad we did that. We didn't leave the hospital until just past 4. I had a bunch of questions to ask, but the biggest were answered right away. Her doc was all for moving to Orencia. He understood that she wanted her Methotrexate back. (How many kids do you know that whine because they don't get their shot?) He says: "Well, this isn't a traditional idea, but she's not a traditional case. Since we can't lower her dose, why don't we try every other week instead of weekly?" Works for me! She absolutely panicked when we agreed to try the Orencia. We had discussed it in the past, but she didn't want to do it so she wouldn't listen. She cried for a good hour. I can't say I blame her. I think that she thought she would be admitted to the hospital and have the IV in her wrist, which she really doesn't like. We all tried to calm her down and have her explain what was so upsetting about it, but she just couldn't do it there. We attempted to show her the Infusion Room but she kept her eyes closed the whole time. Finally, one of the IV nurses offered us a bear. I have pics to post but they didn't send to my Facebook and my phone is off & charging atm. Anyway, this bear is sooooo cool! He came with his own IV drip bag, "needle", splint board, bandaids, alcohol swabs, tape, gauze, tourniquettes, everything. She ended up having a great time playing with the bear, which opened her up for some questions. She's happier about it now. We explained that we can put it where she usually has her blood draws. Not to mention that we can have her draws go through the same port at the same time! No longer will she have 2-3 shots a week plus labs every 6 weeks. At home we'll give her one dose of MTX a month. The other she'll get at the hospital while she's getting her labs drawn and getting her Orencia. At first she'll have to go three times in a month but after that it's every 4 weeks. The drip is a half hour, the total time there usually being about an hour. For the first year & a half on Enbrel it was our miracle. She was a changed girl who went from screaming and hiding from people, afraid of being touched to tackling her brother. Why should we settle for a slow down? Why should we settle for needing 2 or more baths a day because she can't loosen up? I don't think that's fair. It's slow-acting, it can take up to 6 months to fully work, but it has to be better than where she's at right now. I wanted to catch it before a full-flare. This way, they are right next door to our rheumy- on the same floor, even! If she starts to have a hard time we'll request solumedrol to be added while we're there. (It's an IV steroid often used to help control the inflammation in our JA kids). I'm confident this is the right decision. I have spoken with enough parents, doctors, and even Orencia reps to be confident. We were planning on scheduling today but she was so upset there that we couldn't. Hopefully tomorrow I can get an appointment made. It will be a few days before we can get in so that they can argue with my insurance company. (Yay.)
One last note- he got help! They gave him a nurse practitioner! That should help immensely. I forget her name, but she seems very, very nice. I'm so thrilled for him! He needed more help quite some time ago. They have started to revamp the way they do things, but I know they have still been losing people. Ok, time to crash. Take care, ya'll!
*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!
Thursday, September 2, 2010
What a crazy day!
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