Halloween: Jacob, Allison & Kathleen (cousin)
Jacob & Banzai at the park
Brothers: Mitch & Jacob
Mitch, Grady, Nicole, Kellie & Me jumping off!
Me at McDowell Creek Park
Friday, March 28, 2008
On Easter we went up to my Grandma & Grandpa's house to hunt for eggs. Me and my cousin Kellie were the only ones who got the two big eggs. They were filled with a dollar bill and some cents. We had linner there too, I loved the ham!
Tuesday me, my mom, Jacob and my dad went swimming at the community pool. It was really fun. Jacob kept going down the slide...he must of loved it. In the middle of swimming they brought out a huge iceberg and put it in the middle of the pool in the deep end. They let kids climb up the side and slide down the front. I was going to try it but didn't because it looked too hard to climb up.
Wednesday I went back to the community pool but his time I went with Kenzie, Mayzie, my dad and Jacob. We saw Kenzie's friend there and she was with one of my friends from school, Destinee. We went in the hot tub. I was burning hot!!! Jacob loved it. That night we were going to go to Izzy's with Kenzie, Mayzie and Kristi but we ended up going to KFC instead.
Thursday we went shopping at Target and saw the Smith girls. That night we went to Spice & Ice and had dinner and ice cream.
Mitch went to his friend Grady's on Monday night, came home Tuesday. He went to my Aunt Steph's house Wednesday night and is coming home tonight. He has been very busy... lucky him.
The swimming felt really good. If I was hurting before I got in the pool once I got in it all went away. But afterwards I would hurt really really bad.. so much I could hardly move. But it was worth it.
Tuesday, March 25, 2008
Allison had a great day on Easter. She was able to go to church for the first time and then over to her Grandparents in Sweet Home for "linner" (as she calls it) and an Easter Egg hunt. The weather wasn't great but in between rain showers the kids were able to hunt eggs. Allison was thrilled that she was able to collect the most eggs and as a result the most money. I think her slow and methodical approach paid off. Mitch and her cousin Kellie were fast but they were busy running frantically over trees, each other, and missed many egg finding opportunities. It was great to see Allison out having fun with everyone.
As a result of the fun on Easter, Monday was a hard day on Allison. She was on the couch most of the day in pain, tired and just uncomfortable. She didn't eat much so that seems to make it harder on her body too.
Today she has perked up. She spent a lot of time this morning playing in her room and up and about. Then this afternoon John, Jacob, Allison and I went swimming at the community pool. Jacob and Allison had a great time going down the slide, playing and splashing. Allison swam and just did "normal" kid things in the pool. So fun to see her just laugh and play with Jacob without pain. Now we are worried about what tonight and tomorrow will bring for Allison since she was so active today.
One of the hardest parts about this disease is that there is no gauge. She can have a great day and be active and playing and then that evening or the next day she seems to pay with pain, exhaustion and spiking fevers. But we don't want to limit what she can do and right now we have no way of knowing what is too much for her. Doctors and research says to keep JRA kids active as close to normal as possible, but it is difficult when they seem to suffer afterwards. So we plug along trying the best we can. Where is that rule book anyway????
Thanks for your thoughts and prayers we do appreciate them.
Saturday, March 22, 2008
Wednesday I tried going to school when I got there I felt like crying. When I walked in all of the kids hair looked really long, even the boys. I think I have been away from school for a long time. My mom talked to them about what is going on and they asked a lot of questions. When we left Mrs. Bailey, my brother Mitch's former 5th grade teacher stopped and hugged me and was so happy to see me there. It made me feel good.
Thursday and Friday I stayed on the couch most of the days because I wasn't feeling that good. I wasn't able to go to school because I woke up with fevers.
Today, we went to the movie "Horton Hears a Who," it was very, very, very funny. There was a baby behind us that was crying. After the movie I tried to sit up but I couldn't sit up because I had been sitting in the same position the whole time so I was stuck. I learned I can't sit in the same position for a long time, I need to move around.
Tonight we are going to decorate Easter Eggs. We are going to try my Dad's new rubber band technique for decorating eggs. Tomorrow is Easter and I can't wait. We are going up to my Grandma & Grandpa's house after church and have an Easter Egg hunt and have "linner." (A combo of lunch and dinner)
Thursday, March 20, 2008
We were hoping that Allison would make it back to school today but she woke up with a 101.5 fever this morning and felt puny all day. She spent most of the day on the couch with little energy and a lot of pain in her stomach and abdomen. She was also very rashy today. Probably the worst day she has had as far as the rash is concerned. Doesn't bother her much just looks wicked. So, the new outfit will have to wait until after spring break to visit school with Allison.
Allison's teacher will be gone on Friday so we will not attempt to take her even if she feels up to it. A little too much for a sub to have to handle, Allison on her first day being in the class as a student. We will try again after spring break.
Allison is really looking forward to Easter that is quickly approaching and hoping to make it to church ( it would be her first time back since all of this started) and then up to Grandma & Grandpa Lane's in Sweet Home for dinner and an Easter Egg Hunt with the cousins! She is already strategizing how to get the most eggs from her siblings and cousins. They may be suprised that she has a few tricks up her sleeves. :)
Wednesday, March 19, 2008
Hello all! I'm doing the blog for Allison tonight because she is a little tired from her big day. We went to school!!! This was her first time back since mid-January. She was very nervous and scared (yeah, we had to push her in the door a bit). John and I along with little brother Jacob went along for moral support. Allison did great. The students in her class were all glad to see her and I know it was good for her to see them again. We talked to them about what has been going on with Allison and then they asked many caring and insightful questions. Allison is lucky to have such a caring group of kids in her classroom and wonderful teacher. We stayed about 30 minutes until lunch. Tomorrow if all goes well she will try to stay a little longer.
We went to lunch after our school visit at KFC (wednesday is $2 lap top meal...if you didn't know). On the way home we decided to stop at Old Navy and maybe get a new outfit for school. This is the first time since Allison has been sick that we have even attempted a shopping trip. Well, "Shopper Queen" Allison found an outfit quickly which was good because she only lasted about 10 min. shopping before she was tired and wanted to go home. She didn't even feel like trying the clothes on. Not her old "power shopper" self . She spent the rest of the afternoon resting up.
It is now 6:00 pm and it is Pizza Hut tonight. She is having a pizza craving. Her fever is starting to go up so hopefully it won't be too rough of a night for her. But, with the fever coming now hopefully she won't have one in the morning and she will be on for school.
Thanks for all your prayers and good thoughts. I know many of you have been praying for Allison to be strong enough to go to school. Thanks so much.
Monday, March 17, 2008
I didn't get to go to school today because I woke up with a 101 fever and feeling very achy. That lasted until 2:00. Hopefully, I will feel good enough to go to school one day this week before Spring Break. I really need to get some more homework!
Please remember when post a comment to sign your name so I know who it is writing the comment. I get really frustrated when I don't know who it is writing to me.
We weighed me last night and I am 86 pounds!!!! I gained 2 1/2 pounds over a couple of days. It was probably from eating so much meat. I have two steaks for lunch today. I am really, really loving steak right now. If I could I would eat steak all the time. I am now starting to eat more which is good for me so I don't have to take new medication that will make me want to eat food.
TOP OF THE MORIN' TO YOU !On Saturday Allison took her first outing without the family. She went to her Sunday School teacher's home for a bake day. It gave her an chance to see friends, hang out and be away from us for awhile. I think she enjoyed the 4 hours of freedom away & getting to use mom's cell phone.
Saturday night she spiked a fever in the middle of the night so her and I were up a good share of the night and only dozing occasionally.
Sunday was an amazing day. She ate like crazy. She started the day with bacon and sausage, ate 2 (yes, TWO) steaks & watermelon at lunch, 1/2 a large hamburger & fries for dinner and then various things in between. I don't think she has ever in her life ate that much in one day. We were all very happy and when she weighed and she had gained 2.5 lbs. cheers rang out!! She probably won't eat for a few days now but it was good to see her eat food and do it willingly.
Today we are hoping she will be able to go to school and see the kids and talk to them about what is going on with her and then try and go on her own this week. She didn't spike a fever at all yesterday so we will have to see when she wakes up how she is doing. Could be she wakes up with a fever this morning. You just never know what your going to get with this disease.
Allison friends also gave her an exercise ball over the weekend.... Thanks Smiths (especially Kenzie & Mayzie!) She is enjoying using it but keeping little brother off of it is challenging. Allison will probably post later today and share how our school adventure goes.
HAPPY ST. PATRICK'S DAY!!!!
Thursday, March 13, 2008
The best thing about going to the doctor is I didn't have to get a blood test or a shot!!!! We all thought I was probably going to get a blood test since I haven't had one in over a month. If I would have gotten one it would have been my 4th one since I have got JRA. What is funny is that when I was little I by mistake got two chicken pox shots and the doctor yesterday told us that now kids are starting to need 2 chicken pox shots. So I got ahead start on everyone else. The doctor said if I don't start to eat more and stop losing weight he will have to put me on medication to help me want to eat more food. He did some excercises with my joints and muscles so last night my ankle started to really, really hurt. I thought it was broken it hurt so much. It still hurts today but is getting better. Last night I had a really bad rash on my stomach. It looked like chicken pox but they were all together. We will try to put a picture up later of the rash.
We went to lunch after the doctor's and threw peanut shells on the ground. Mom and Dad got weird hamburgers with pineapple slices and teriyake hamburgers they were real sloppy. I had just a plain old hamburger with fries and a cookie.
We went to my Aunt Steph's house to pick up Jacob. We left him there so he wouldn't have to go to the doctors with us. I got to play with my cousin Kathleen and Jacob for awhile. But then they kept getting mad at each other and then they would get mad at me and it was hard to play with them. Also, because I had gum they were attacking me for the gum. (dun, dun, dun)
Thanks for reading,
Wednesday we went to Dornbecher's in Portland for Allison's doctor's appointment. We now have an official diagnosis of Systemic Juvenile Rheumatoid Arthritis. Dr. Borzy was great and we all really liked him. The good news is after testing all of Allison's joints it looks like presently they are functionally normally. Although she had some limited movement in her back and shoulders. Dr. Borzy explained that usually the fevers she is experiencing last 6 months to a year. Joint issues usually begins to appear 6 weeks to 6 months. We now just play the waiting and monitoring game until the arthritis begins to settle in specific joints.
Where do we go from here? In May Allison will have another appointment with Dr. Borzy. Once joints are targeted we will begin additional medication to help prevent any damage to those joints. So right now we stay status quo and just keep her on Aleve twice a day and Tylenol 3 for when she is in a lot of pain. We need to try and keep Allison moving and using her joints normally as much as she is able. As far as school is concerned we are hoping that next week she can try going as much as she is able, even if only for a hour a day to begin.
Allison had a rough evening last night as some of her joints were very sore and painful from the testing done at the doctor's we are assuming. Hopefully they will ease up and she will feel better today. Thanks for all your thoughts and prayers. We all appreciate them greatly.
Tuesday, March 11, 2008
The last few days Allison has not been spiking high fevers. Yeah!! Although she is having a lot of back pain and is still rashy. We aren't sure if the fevers are running their course and now the arthritis will set in or we are just in a lull with the fevers. Wednesday she has an appointment at OHSU in Portland with the pediatric rheumatologist so hopefully he will be able to shed some light on where we are in the process and where we are going.
Thanks so much to all of you who have sent cards, emails, gifts, and now posts on the blog. She loves to hear from people and she is very gifty so they all mean a lot to her and make her feel very special. Allison or one of us will post tomorrow on how the doctor's appointment goes.
Monday, March 10, 2008
Friday my mom left to go to a women's retreat in Turner Oregon. My Dad had to take care of me, I was afraid he wouldn't do as good job as my Mom does, but he did an awesome job. On Saturday night I got a fever, once my fever started to go away I got really hungry. Nothing we had to eat sounded good to me so my Dad went out and got me McDonalds Happy Meal & a McFlurry late at night. My older brother Mitch stayed with me while Jacob was in bed asleep.
The next day, my Mom came home after the retreat. I was really craving steak so my Dad took us to Applebees. I thought we were going to have lunch with my mom but she ended up having lunch at Red Robin with her lady friends. When she was done she came over and sat with us. The steak was the best steak I have ever tasted in my life. My Mom & Dad were happy I ate it because they want me to eat protein and I am not eating much food right now. Bye for now, Allison.
Wednesday, March 5, 2008
Many people have questions about what Allison is going through so we will try to answer some of them through this blog a few at a time. If you have questions you would like her to answer let us know.
- What is JRA? short for juvenile rheumatoid arthritis
- Is JRA catchy or is Allison contagious? NO! You can not catch JRA from someone else.
- When she has a fever is she contagious? NO!
- How does Allison feel? That changes day to day and hour by hour. When Allison doesn't have a fever she feels ok. She gets up, moves around, can go for short trips out. When her fever starts she is in pain and feels miserable.
- How long do her fevers last? Allison has a fever everyday. They usually last 5-6 hours but can last longer. Right now they are starting in the late afternoon or early evening and last until late at night. Allison gets to stay up late...... but it isn't much fun.
- Does Allison take medicine? Right now Allison is taking high doses of Aleve twice a day. She sometimes takes Tylenol with Codine for pain if she is really hurting.
- Is Allison going to school? Allison is not able to go to school right now. We are hoping in the next few weeks that she will be able to try and go to school for a few hours on days that she is able. If she is very tired, in pain or running a fever it is just too difficult.
- What is Alekonab? Alekona is Allison in Hawaiian and the "b" is for her last name.
This is day 47 for of Allison not feeling well. Today we talked about it and she thought it would be a good idea to start a blog so people can check in on how she is doing. Those of you who know Allison know, that we suspect strongly that Allison had Juvenile Rheumatoid Arthritis (JRA). Doctors say you have to have symptoms for 6 weeks before they will diagnose you and we are now almost to 7 weeks. Next week on Wednesday we will go to the Juvenile Rheumatologist in Portland. Our family is now on a journey we never expected and we are learning lots. Hopefully, Allison will also make entries and become more computer savoy by using this blog. We will try to answer questions and keep you updated as to Allison's condition and have fun sharing some of her experiences.