On the 19th of May it was my birthday it was a Monday. I wasn't able to go to school because I wasn't feeling well. That night I had a really high fever it stunk because I didn't feel good and it was my birthday. I got an icee maker from Mitch, a gameboy game from Jacob, and a Bewitched DVD and a High School Musical Wii game from my Mom and Dad. On the High School Musical Wii game you have to pick a song and sing the song. It is really fun!! I had an Oreo Ice cream Cake it tasted really good. I also got Alvin and the Chipmunks from the Smiths & diving sticks. I got lots of money for my birthday.
That Thursday I had to go to the doctor's in Portland and while we were in Portland me, my Mom, Jacob, Aunt Steph and Kathleen went to lunch and shopping. We went to a store called Justice. It is just for girls. I got two really cute outfits. One my Aunt Steph bought me for my birthday and the other I bought on my own. I also got an Old Navy card for $50 to spend from Grandma & Grandpa Lane.
On Saturday Kenzie and Mayzie came over for the day and we played the Wii game and had a fun girls day. On Sunday my Aunt Diane came over and stayed for a couple hours and then in the evening I went over to the Smith's house and Grady came to our house and then I played with Kenzie for about an hour and half and then Kenzie went to a friend's house to spend the night. Mayzie came home from youth group and we played together and then Mayzie came and spent the night at my house. That was very exciting because that was the first person I had spend the night since I have had JRA.
This week I went to school on Tuesday and Wednesday but wasn't able to go Thursday or today. I didn't go to school because I didn't feel well. My ankles and back are hurting and my right palm is swollen, red and hurts. This is what has been happening the last couple weeks. Sorry I haven't been writing that much.
Tuesday, May 20, 2008
Allison made it 4 full days of school last week. Big celebration!!!! She was feeling poorly on Friday but toughed it out and made it the whole day. Seems like her medication methotrexate wears off and by Friday she is needing another dose. She had her 2nd full dose that night. Saturday during the day she felt pretty good but by 4 in the afternoon she started running a temp and having pain.
Now comes the "Downs" she felt terrible on Sunday, Monday and today. She has the "yucks" from the methotrexate, is running the high fevers again, and is experiencing more pain in the joints. It really appears she is doing worse again.
Monday was her 10th birthday. We were all hoping and praying for Allison to have a good day, sadly that didn't happen. She opened gifts, tried a little ice cream cake, and missed dinner at her favorite place. She had been wanting fries from Red Robin, but just wasn't up to it. She was back up to 103 for a temp. and in a lot of pain all over her body. Bummed us all out.
She is missing school again today. No fever but the "yucks" are still just as strong. She is achy and in pain. We are hoping to turn a corner this evening, but you just never know what is ahead. We talked with our Pediatric Rheumatologist today and he is having us spread out her methotrexate dose so that she will be getting some Friday and then the rest on Tuesday. Hoping this might help ease up the "Yucks." He feels she is having a flare up. He explained that it is like the waves of the ocean. Seems like we are currently in rough seas. Hopefully we can get to some calmer waters soon. :)
I thought you might be wondering what are the "Yucks." It is the feeling you have usually for a few days following the taking of methotrexate. It is hard for Allison to describe, (for most jra kids it is hard to describe) she just feels yucky inside and out, and all over. She told me the other day she now understands what the doctor meant when she said she would feel puny or yucky. I think it is one of those things you can't understand unless you are the one taking the medication. Well, I wanted to update every one. Thanks so much for reading and caring about Allison. We all appreciate your love, prayers, care and support. Hopefully Allison will feel like making an entry soon.
Leslie "The Mom"
Monday, May 12, 2008
On Saturday we did the Arthritis Walk, it was lots of fun. You could walk either one or 3 miles. I only walked one mile because I started to feel sore a little bit. They had a bouncer toy there where you had to climb up the rope, jump down into the center then you crawl over a big blow up tube, go throw a tunnel and then be done. It was fun. I did it a lot of times. One time when I was jumping down in to the center I fell on my arm. I told Kenzie Smith but I thought it was nothing because it didn't really hurt. That night it became swollen and started to really hurt.
I had fifteen people on Team Lightning. Their names were; Kenzie & Grady Smith, Steph and Kathleen Meldrum, Kellie Weld, my Grandma & Grandpa Lane, Steve, Kathy and Jordan Lane, my Mom & Dad, Mitch, Jacob and Me! Our team has raised $1,330.00 for the Arthritis Foundation. We are in Second place for the most money. The Arthritis people said they will give us until the end of the month to keep raising money so people who want to can keep giving money. Because our team did so well we all got t-shirts. Normally, you only get a t-shirt if you raise $100 but they gave all of our team members a t-shirt.
After the Arthritis walk we went over and rode on the Carousel because it was right next to it. It was lots of fun. I rode on a horse named Nugget which is the name of one of my Grandpa's horses at his home. Then we went and played on the playground right next to the Carousel. Jacob and my cousin Kathleen were being very crazy. They were acting like Zombies and chasing us.
For decoration they had lots of balloons hooked together at the Arthritis Walk. Mitch and Grady took them at the end but when we went on the Carousel they had to leave it outside and some one took it.
After all that we went out to eat at Novak's for Mother's Day. Then we all went home and played the Wii and did stuff. At 7:00 we got Chocolate Boxes at Novak's and brought them back to our house. They were delicious.
Thanks to everybody who donated money to my team for the Arthritis Walk.
Friday, May 9, 2008
Allison has had a great week. She made it Tuesday and Wednesday full days at school. Because of conferences there was no school on Thursday and Friday. Yesterday she went to her friend Kenzie's birthday party for the day. She enjoyed hanging our with kids and just having fun. Although last night she was tired and pretty sore.
Allison ran a low grade fever last night but that is the first fever she has had since the day of fevers on Monday!! This is a big Wow. It is so nice because it allows her to do her life as normally as possible.
Tonight will be her third dosage of Methotrexate. This will be her first full dose. Hopefully she will continue to be fine and not have any adverse reactions to the medication. From what we hear it can take 6-7 weeks for it to kick in so it could still be awhile before we see any side effects.
Just wanted to give a quick update. Allison is resting up for the walk tomorrow. We are all hoping and praying she will feel great in the morning and be able to participate with our team. If you are on the team we will see you there bright and early. If not Allison will post the results tomorrow after the race.
Leslie "The Mom"
The Arthritis Walk for the Arthritis Foundation is tomorrow, Saturday!! There are 14 members on my team. I have went beyond my personal goal and getting close to our team goal. I'm so happy. Right now I and our team are in 2nd place for the most money raised. If you haven't donated and want to you can still do it today. Look in my earlier posts and there is a link to go online and pledge.
I hope we have great weather and that I am able to walk.
Thanks to all of you who have been donating, it is great!
* I will let you know how tomorrow goes and post some pictures too.
Tuesday, May 6, 2008
HURRAY!!!!! Allison made it to school for the first full day since January 17th!! This was huge hurdle for her. She made it for the beginning of the day and lasted until the very end of the day. We are so proud of her. She now knows she can do it and it is OK. So, days when she is feeling good and fever free she can make it for a full day. This is a positive step in the right direction.
Just wanted to let everyone know of this accomplishment since I know lots of people are praying for her to make it back to school successfully.
Monday, May 5, 2008
Allison had a great weekend. She felt good on Saturday and was out helping to work in the yard ( even running the edger) for a little bit in the morning. Then her friend Kenzie came over and the two of them retreated into the house to play the Wii while the rest of us and part of the Smith Clan worked on our yard. Allison was up and about until evening and then started running the fever.
On Sunday we headed to Portland for a JRA Meeting. Families met and the kids took a hike and did arts & crafts while parents listened to a Pediatric Rheumatologist speak. It was informative for us and fun for the kids. We were able to meet several families who daughters have Systemic JRA like Allison. One family whose daughter has been ill a year and she is 7 years old. The other girl was diagnosed when she was ten and now she is nineteen and a freshman in college. It was a great opportunity to connect with others. Allison didn't run a fever all day or evening on Sunday. She was pepped up and ready to go to school on Monday starting at the beginning of the day and going for a whole day. (our big goal lately- full day at school)
When Monday arrived, Allison woke with a fever and battled one all day. I think she used up too much energy on the weekend and stole some from Monday that she had to repay today. :( Hopefully, tomorrow she will feel better and make it to school in the morning.
Wii Update: The family is getting lots of use out of the new Wii and getting to practice conflict resolution as well. Only a few arguments over whose turn it is and what game to play. It is fun to see Allison beat Mitch at boxing. :) Allison is also awesome at bowling.
Thursday, May 1, 2008
Yesterday I got a Wii and games from the Albany Fire Department. When they came by to give it to me I was very surprised. I never thought someone would give me a Wii for a present. I had been feeling bad all day and after that I felt much better. I played for a long time, but then I had to stop because my arm started to hurt. Mitch wants to play all the time, he even wanted to skip hockey last night and stay home and play it all night. But my parents didn't let him.
Today I am going to the pain doctor in Portland who I will see to help me with my pain. What is great about her is she doesn't do needles so no shots and no blood tests!!!!! :) My appointment is at 2:00 so we will be leaving home at about 11:30. Jacob is staying at my Aunt Steph's house in Portland so we will just drop him off and then go to the doctor's at Dornbecher's hospital.
Today we are going to ride the tram. I rode on once before with my Aunt Steph. It was very fun. What we are going to do, is ride on it from hospital down because that is a free ride. But then we will have to pay to get back up to our car.
On May 10th, my family and some family and friends are doing an Arthritis Walk in Salem. We have to make a team with 10 or more people. Since I have JRA I get to be the team captain. Which is very cool. Our team name is Team Lightning. Each member has to raise a $100 or more to get the free t-shirt and prizes. If you don't it is OK, you can still participate. My team goal is to raise $1000.00. So far we have about $280.00. Thank you everyone who has been donating money, it has really helped us raise money for the Arthritis Foundation.