Doctor Visit Thursday

Yesterday we went to Portland to visit Dr. Borzy(Pediatric Rheumatologist). Her appointment went well but there have been some changes in her condition. Upon examination it was discovered she has some fluid on her knees. There is no active arthritis presently working. Her hands, wrists and fingers are a concern and may have some active arthritis especially since they have been swollen, red and yesterday they were tender and a bit puffy. So, Allison has to do exercises 3 times a day to keep her range of movement in her knees, hands, wrists and fingers. This will be very important to prevent permanent joint damage and to keep her range of motion in those joints. She will also be going on a new medication called Methotrexate once a week orally. You may have heard of this medication as it is a chemo drug commonly used for cancer patients. Allison will be taking a very low dosage. The side effects we are to look for are her feeling "yucky" for two days after taking the medication and for mouth sores. We are going to give her the med. on the weekend so hopefully it will not impact her going to school and then if she has mouth sores the dr. will put her on folic acid and that will clear them right up. This medication will not do anything for her fever or rash but should help with swelling and pain in her joints. We still just wait for the fever and rash to run it's course, whenever that might be.

Some very good news was Allison gained 2 pounds!!!!!!! We were all so excited. Dr. Borzy was very thrilled so we did not have to look at her having to take predisone. HURRAY!!!! It is very important that she keep her weight up and something we have to continue to focus on.

Sadly for Allison she did have to have a blood work done. She was not thrilled at all since it has been awhile since she has been poked. She did great although the site was quite sore afterwards. We made a trip to the bookstore, candy shop and then went to PF Changs for dinner. So, I think that helped to make up for some of the pain. :)

Thanks for reading and supporting Allison and our family
Leslie "The Mom"

Arthiritis Walk & Update

Hello All!
Allison is working a fever this morning so she isn't at school and doesn't feel up to blogging yet. She has lots she wants to fill everyone in on so hopefully later today she will feel up to getting on the computer and posting some pictures and the things she has been doing lately. She is having up and down days this week. We are finding that there are times Allison is able to push through and almost avoid a fever or high fever but then the next day or so she has to "payback" what she borrowed from the "energy bank." She has experienced this a couple times this week when she went on a field trip for 1/2 day with her class on Tuesday but then Wed. was miserable. Yesterday she did great in Portland at the doctor's and now seems to be paying back.

Allison has inspired us to participate in our local Arthritis Foundation Fundraising Walk. It will be May 10th in Salem. There is a 5K and a 1 mile walk so there are options. :) Allison would like to get 10 people to walk with her on her team. She is, of course, the captain and loves the idea of being incharge. She has set a lofty goal of trying to raise 1200.00. Each team member that raises $100.00 gets the free t-shirt. If you would like to know more about this go to the following website: www.kintera.org/faf/home/default.asp?ievent=262215 At this site you can simply look on the left side under Visitors and click on "Support a Participant." That will take you to a place to type in a name and then you can go directly to the participant's site. Once there you can follow along with how the participant is doing, donate on-line or print off a donation card you can mail in. All of us are participating and hoping for more family and friends to join us. You can find currently sites for Allison, Mitch and Leslie. John and Jacob have yet to be added but will be soon. :)

SORE HANDS

My hands have been very sore the last couple weeks.A couple nights ago my left hand got really swollen it still is.Last night my right hand started to swell up too.Now the swelling on the right hand is going down but its still pretty puffy on the left.My fingers are pretty stiff too.Its kinda hard for me to write or hold a book but since i love reading so much i try to hold the book anyway

Since my hands are swelling up my docters oppiontment is going to be a little earler.On may first i am going to see someone about how to deal with the pain.Aspen from church is going to have surgery soon and my mom said she isn't even scared.If i were her i would be very very scared.My birthday is coming up soon it is on may 19th. i can't wait i will be ten years old.

thanks for reading

Allison

Questions

I thought I would take a minute and answer some questions that we have been getting from people.  

1.  Does Allison do the typing on her blogs?

The blog entries done by Allison are sometimes typed by her.  If her hands, wrists, fingers are hurting her (like lately) I will type what she dictates to me. 

2.  When does Allison go back to the doctor?

She has an appointment May 8th with Dr. Borzy at OHSU he is the Pediatric Rheumatologist that she is seeing.  

On May 1st Allison has an appointment at OHSU with a doctor who specializes in pediatric pain management for kids with chronic pain and illnesses. 

3.  When will she go back to school full time?

We have no idea.  Allison made great progress getting back to school and this week has suffered a set back.  When she is running fevers she just can't make it to school or off the couch.  We are hoping she will be able to get back to school next week.  

4.  Is Allison still losing weight?

Allison goes up and down.  She will sometimes go a day or so without eating much especially if she is feeling badly but then she will eat and stock up and she seems to bounce back.  As long as she can keep bouncing back up we are not getting to concerned if she goes down.

5.  Is Allison on a lot of medication?

Right now Allison only takes Aleve twice a day, a vitamin and then regular tylenol if she is having a lot of pain.

6.  How do you make plans?

We don't! No, we make "kinda plans."  We live a lot more day to day now.  If Allison is feeling well we do things, but then we are ready at a moments notice to have to change or adapt plans if she begins to hurt or a fever strikes.  We also take things a lot slower.  Allison's energy level is a lot less so we have to be aware of what she is doing and how much energy she is using.  

7.  Does the weather effect Allison?

Honestly, we aren't sure.  We have started to be more aware of the weather changes and how she is feeling but we have yet to really establish that she is worse in wet rainy weather and better in warm and sunny.  That is something I am sure we will learn as time goes on.  

8.  Can we share Allison's blog with others?

Sure! If you know someone who would like to read her blog or know more information about her feel free to share her blog site or post it. 

9.  What can we do to help Allison?

She loves cards and mail. We also greatly appreciate your prayers.  We know God can  heal Allison and it is through our prayers and prayers of others that this can happen. We gain strength every step of the way knowing people are thinking of Allison and praying for her health and well-being. 

If you have other questions for Allison or us, let us know and we will happily answer them on the blog.  Thanks to all of you that regularly check in on Allison and how she is doing. 

Bad Week/Good Week

On Monday I went swimming with my class but right afterwards I had a fever.  Now everyday I have been getting two fevers a day which is not fun.  Mitch has also been home sick since Tuesday.  Wednesday the Cable Man came and we got cable!!!!!!!!  Hurray!!!!!!!!!!!!!!!  Now we have lots of stuff to watch except sometimes we can't find any good shows to watch. 

I haven't gone to school at all this week but hopefully I will be able to go next week.  I was working a lot on school work and loving it.  I have now had to take a break because my wrists have started hurt and my fingers aren't moving so well.  Now I am taking a break to see if all the writing might be why my wrists are hurting so much.  

Thanks for reading,

Allison

Coast Trip

Last Saturday Me and my family went to the coast.  We went to a lighthouse that was really cool.  There were lots and lots of stairs and at the top there was a place where the lighthouse keeper would sleep and that was cool. In the basement they had a video about the lighthouse and there's a story that isn't true but it says that the lighthouse is haunted.  So now Jacob thinks there is a vampire living in it. 
This is me and my two brothers standing by a big huge bridge at Newport.  For lunch we went to the Chowder Bowl they had very good food.  I also lost my tooth while eating there.  It was bleeding a lot.  
This is me and Jacob standing in front of a huge light bulb they used to light lighthouses.  We also went to Belinda's where you can buy lots of taffy and candy.  It was sad because Jacob couldn't eat any candy right now because he is in trouble for eating mine and Mitch's great big chocolate Easter Bunnies and all my gum.  So we ate taffy without him. 
This is Jacob at the Ripley's Believe it or Not Gift Shop.  We went to the Ripley's Museum and I liked it a lot.  There was one guy who for the last 13 or 14 years of his life just kept collecting chains and putting them around his neck and he would never take them off until he died.  
This is me at the Ripley's Gift Shop buying a big tube of sugar powder that was very good.  On the way home everyone slept except my Mom and Dad, they read the whole time.  My trip to the coast was very fun.  

Wednesday

Hello All!!
Allison has been wanting to get on here and share about our adventures over the weekend and some pictures but she is having a hard week. She is running morning fevers again which has stopped her from being able to go swimming with her class in the morning and to school in the afternoon. She is also in a great deal of pain. It seems to be mostly in her wrists and knees, but when the fever is going she is hurting all over. She isn't able to write or type without considerable pain. Yesterday and now today she is also doing the double fever. She has a morning fever and then in the afternoon just about as it gets back to normal it starts to go up again and goes higher. Not fun for her at all.

We did get cable today so Allison and the boys are thrilled. Real tv and it isn't fuzzy, and snowy. We are all excited to watch American Idol tonight and have the picture be clear.

If she is up to it hopefully we will post pictures tomorrow and she can dictate and I will type her blog. Hope all is well for all of you. I just wanted to give everyone a update since Allison isn't feeling much like posting.

No School for Friday

Hello All!  Allison has had a great week getting back to school.  Unfortunately, she woke with a fever this morning and the rash, that was gone, is back and furious.  She is in quite a bit of pain too.  So, she definitely will not be swimming this morning and probably will not make it for school this afternoon.  :(   The rain has come in and it is pouring this morning after a week of beautiful spring weather.  Just makes me wonder if it could have something to do with how Allison is feeling today.  I will have to make note in her ever increasing log that we keep of her daily health.  This is day 77 (11 weeks) of daily health notes....we are filling up that 3 ring binder. 

It has been nice this week to see Allison getting back to normal activities.  Jacob has enjoyed having some alone time with me again in the afternoons.  The first afternoon he nearly talked my ears off.  I think he barely took a breath.  Probably making up for lost time ..... the boy does know how to talk.  

Hope you all have a great weekend !! We appreciate your thoughts and prayers.   

Leslie "The Mom"

Back to school

Monday my class started going swimming in the mornings so I have been going swimming with them since Monday.  After swimming me, my mom and Jacob go out and have lunch. Then afterwards I would go to school and stay for awhile.  Monday I stayed until 2:00 but Tuesday I stayed until the end of the day.  Yesterday I didn't go to school because my class had a field trip to Portland.  I wanted to go but I didn't feel good.  Last night I got a really high fever. I hadn't gotten really high fevers in a long time.  The fever was 103.8 I felt miserable.  My stomach was hurting a lot and it still is.  The light was bothering my eyes a lot we had to turn off all the lights in the house and dim the tv so we could hardly see American Idol.  

My dad is getting cable for us.  It will be very cool.  But I hope that I can still watch my two favorite shows: Alice and Reba.  

I'm in the green group for swimming which is the highest group.  

Allison