Updates!!

Prednisone: Allison has been off pred. for over a week and is doing great.  We bought the Wii Fit and we are all loving being active and competitive with it.  Allison complained this morning that her ankles hurt. ( Oh No!!) She had been doing the step aerobics on the Wii for quite awhile last night.  Got my Mommy Radar up and alert.  By tonight all is good and no ankle complaints.  Just plain ole' over usage of her ankles.  I love it!!!!!!!!!!  

Grandma Bradner:  She is back at the care facility that she has been living in for almost 2 years.  On Sunday we were told she would only live a day or two.  We took our trailer up and were there to help out and be close.  Tuesday night we came home so the kids could go to school expecting at any time to get a call that she had passed on.  No call.  She is still holding on.  Nurses keep telling us all a couple days.  We are patient and trying to make the most of the days she has left with us.  She is a sleep all the time at this point.  God will take her when He is ready.  We appreciate all your prayers and thoughts during this time for our family.  

John:  When we got home on Tuesday he wasn't feeling well.  He went to work a little late on Wednesday and by the time he came home that night he was running a fever, miserable and looked even worse.  He has felt just horrible since.  Tonight he is eating more and seems a little better, not good or well but, a slight improvement.  We are thankful that his mom is holding on for a few more days so that he can heal and feel better.  

Mitch:  Hockey is going strong and Mitch is doing great this year.  His team is undefeated at this point (played 4 games so far.)  He is still playing in the High School league in Portland. So, we make many trips to Portland these days.  Luckily gas prices are continuing to drop.  Whew!!

If you caught KATU (channel 2 locally) focus on West Albany tonight in their Sports Blitz you may have been able to catch a glimpse of Mitch playing in the band.  Go Bulldogs!!

Allison:  Her class had a rice luncheon today.  They only served rice.  People could come and have a bowl of rice and make a donation and then next week the 5th grade classes will go shopping to purchase food for a homeless shelter.  Her teacher has done this for many years (Mrs. Bailey had Mitch in 5th grade too!)  and it is such a great learning experience for the kids.  

Jacob:   Is our designated family comedian as always and keeps all situations filled with humor and light heartedness.  He is very into James "Blonde" (Bond) movies right now.  Anything big brother and sister like he loves.  :)   He is enjoying the Wii Fit very much and wants to race everyone in the family in the jogging.  

***(Oh, special thanks once again to our AFD family for the Wii.  The kids (ok, and John and I) do love it and it is even better with the addition of the Wii Fit.  Work off a few of those extra pounds that we have put on. )

The Bradners

Off the Prednisone!!!!!!!

Three cheers for Allison!!!! As of Wednesday of this week she is no longer taking prednisone.  She is completely weaned off and no break through symptoms, flares or side effects.  We feel so blessed and that through everyone's prayers and good thoughts she is being healed.  We go to our local doctor for blood work December 16th and then on December 23rd we will go to Dr. Kingsbury, her pediatric rheumatologist in Portland.  Looking forward to those appointments.  

Allison will continue to take a vitamin and folic acid daily.  ( Folic acid helps prevent mouth sores that Methotrexate causes)  On Fridays she will continue to take the Methotrexate and she has anti nausea medication she can take if needed since the Methotrexate some times upsets her stomach.  

We are keeping the hope strong and alive that Allison will be blessed and be one of the kids with Systemic JRA that out grow it in a year.  I think back to some of the dark days when Allison was so sick and I just didn't think we could get to the point where she would be doing so well, I always had hope, but never that she would get there so quickly.  When your child gets the rarest form of a disease it just doesn't seem like you could be lucky enough to have it go away so quickly ( relatively.)  God is good.  

Allison wants to post Halloween and some fall activity pictures.  Since we have a 4 day weekend because of Veterans Day she will have a chance to post.  

One more thing, please keep John's Mom in your thoughts and prayers.  She has been in the hospital in Portland since Monday.  She is in late stages of Alzheimer's and she and the family could use your prayers for peace, calmness and wisdom.  

Thanks so much!!!

Leslie  

All is Well!!!

Hello everyone!!
Sorry we have been so neglegent in posting here recently. Seems like life is just busy these days. First and foremost, Allison is doing GREAT!!! Today she dropped to 3 mg. of prednisone daily. She looks wonderful, is full of energy and as active as she use to be. We will continue to drop her prednisone each Wednesday by 1 mg. until she is completely off of it. We are getting very close. As long as she stays free of side effects we just keep moving down. What a blessing her good health is to us right now.

We have had several health scares with friends and family members over the last month. Great Grandpa Parrish fell and broke his hip, he is 93 and is currently in rehab in Lebanon. He has lived on his own so this is very tough on him. Aunt Cindy, (Brian, John's brother's wife) suffered from a stroke ( she is only 50!!) She is doing well but has some issues with speech that she will be working to overcome. Thankfully it wasn't worse. Then our dear friend Dave K. had surgery for colon cancer and once he is up to it will have to have chemo. We have been doing a lot of praying for our friends and family lately. Please feel free to add them to your prayers if you feel so inclined.

Last weekend was the "cider squeezing" at Grandma & Grandpa Lanes. It was a beautiful fall day and perfect for being outside. We have been drinking cider like crazy. If you haven't tasted fresh squeezed cider you do not know what you are missing. Yummy!! Just like drinking an apple....so sweet. Nothing is better than hot carmel apple cider on a chilly fall evening. It was nice to see Aunt Nellie and Uncle Tom who stopped by to join in the fun for a bit.

Today I went on a field trip with Allison and all the rest of the fifth graders at her school. We went to Eugene for a musical/ballet performance at the Hult Center which was a little short but very entertaining. ( we arrived late) Then we headed to Peoria for lunch in a cemetary. Yeah, it was a first for me too. I hadn't eaten lunch in a cemetary until today. It was a Pioneer cemetary and we were going to do rubbings of headstones but then ran out of time and....well....just ate lunch there and headed back to the school. Buses had a tight schedule to keep. We had some great games of hangman going on during the bus trip back to school.

We will try to be better about keeping you updated on what is going on. Sorry for our lapse. We appreciate you all checking in and keeping up with what is going on with Allison and our family.

The Bradners

A Blip

Yes, we had a little "Blip" in Allison's progress.  We got a little less boring last night.  Allison went to Robotics after school, piano lessons and helped to wash the van.  Suddenly, she was complaining of her ankle hurting, that quickly changed to limping and then crawling on the floor because it hurt too much to put pressure on it.  When John looked at it her ankle was noticeably swollen and painful to touch.  So we put ice on it and gave her some Aleve.  At bedtime she was unable to put any weight at all it and John had to carry her up to bed.  We were very concerned because yesterday we had dropped her prednisone from 7 mg to 6 mg. Had this slight change pushed her into a flare???  

Luckily we have some wonderful jra angels (Moms with kids who have jra) who are so supportive and always there for us.  We were encouraged to wait it out and see if it might just be a slight reaction to the lowering of her prednisone.  Put our minds a little at ease. 

This morning it was still swollen but looked a little better and she was limping around the house.  We gave her more Aleve and tried moist heat this morning.  She went to school and when she came home in the afternoon said, "it was all good."  No pain, no issue!!  She actually said when she got to school and started walking on it more it was like her ankle loosened up and felt better.  Whew!!  

So, what does this mean?  Could be nothing or it could mean that as she weans off the prednisone more she may experience swelling and pain here and there in her joints.  Hopefully no fevers.  A friend on a web message board whose son is systemic like Allison said that when her son was weaning off he would have "little flares" with each drop in prednisone.  So, that is our little "Blip" that jumped onto the screen.  Keep Allison in your prayers and thoughts that those "Blips" stay to a minimum. 

Thanks for checking in,

Leslie

Visit to Dr. Kingsbury

Boring, Boring, Boring!!  That is what Allison was at the doctors and we LOVE IT!!!!! Keep giving us boring and we will be very happy.    Dr. K checked her over and no issues with joints, movements, inflammation or anything.  What a blessing and answer to lots of prayer.  

Where do we go from here?

    Well, Dr. K said that we are to continue to taper ( wean) Allison off the prednisone.  We will drop her dose by 1 mg. each week until we are able to stop.  As we continue this process we will remain on alert for break through symptoms.  We hear often kids get right down close to being off and BOOM, they are hit with some break through symptoms.  So, we will see how it goes for the next 7-8 weeks.  

   After she is off the prednisone and symptom free we will probably wait a year keeping her on Methotrexate before we try to take her off that medication and see what happens.  So, we still have a road ahead of us but we continue to be encouraged by Allison's progress.

  Her blood work result were great by the way.  I am not sure I mentioned that previously.  

    Sed. rate 3 ( if you remember it was 0 but Dr. K assures us that is very normal) Sed. rate is 

    one we watch closely to see if she has inflammation going on in her body.  When Allison was 

    at her sickest she had a Sed. rate of 92.  Such a difference.  

Thanks again for all your positive thoughts and prayers they have helped us so much and continue to do so.  

The Bradner Family 

What's Going On?

Sorry we haven't posted in awhile.  Everyone is trying to get back into the school routine.  Allison is doing great in school and loves her teacher and class.  She was just selected to join the Lego Robotics club at school so she is very excited about this new activity.  

We go to see our local doctor today to check in and have blood work done.  We are anxious to see if her numbers are still looking good with us continuing to drop her prednisone.  Next Monday we go to Portland to see Dr. Kingbury ( Ped. Rheumy) so he can check her out.  We are praying for an uneventful and boring doctor's visit.  :) 

Allison has been fighting a bad cold for the last several weeks, a consequence of her low immune system and being back with all the kids at school.  Besides the cold she has been pretty healthy.

On Saturday Jacob had his first soccer game.  We all thoroughly enjoyed watching him out on the field.  We will be spending Saturdays on the soccer field for the next few months.  

Thanks for checking in.  I will post the results of Allison's blood work when we get the numbers. 

Leslie

First Day of School

Allison started school on Tuesday September 2nd.  She is in fifth grade this year and was very excited to start school. 
Here you can see the huge backpack full of "essentials" she had to tote to school the first day.  How kids lug around those heavy backpacks I just don't know.  Cute polka-dots.
Mitch got an extra day off this year since he is a Sophmore this year.  So he didn't start until Wednesday.  He loved that.  
I think his backpack is actually smaller than Allison's for the first day of school.  That won't last long.  
What good lookin' kids.  I was lucky to get these outside the house.  They won't let me take pictures in the classrooms on the first day of school any longer.  Growing older.  

Medicine Update

Allison has made is successfully down to 10 mg of prednisone without any break through symptoms. We were to just leave her at that dose until we go to Portland to see her Pediatric Rheumatologist September 22nd.  John and I were talking and decided to call and check with Dr. Kingsbury and see if he might want us to continue the taper since she is doing so well.  When John spoke to the nurse she said the doctor was very happy with Allison's progress and to drop her down to 8 mg. and then if she is tolerating that in 10-14 days drop her to 6 mg.  This is huge.  We are doing the happy dance around here and hoping she just continues to hold steady as we slowly lower her dosage.  Keep her in your prayers!!!  We know they work. 

Leslie

A few more

John protecting Jacob and Allison during the scary stories around the campfire that they all begged for to begin with.  
Our dog Banzai relaxing and enjoy the beach
Leslie and Kristi enjoying the fire and trying to ignore the kids the best we could.  Relaxing, but not quiet with 7 kids and 2 dogs.
Kenzie, Mayzie, Mitch and Grady enjoying the fire.  Looks like Mitch might be a little close to that fire.  Notice the fire beside Kenzie. (Strange what the fire will do in a photo)

More Beach Pictures

Allie and Duchess snuggling on the beach.  Duchess was "recovering from surgery but there was no stopping that little dog.  
Grady, Jacob and Mitch at the beach holding still for a moment.  Jacob spent most of the weekend soaking wet and covered with sand.  
Kids around the campfire, Allison, Kenzie, Mitch, Grady and Jacob walking away, who knows where he might be going???
Jamie and Jacob having a high level conversation about the "meaning of life" on the beach. 

Beach Trip

For the Labor Day weekend we went to the Oregon Beach with our friends the Smiths.  We rented a house for three nights.  The weather was sunny for the most part and beautiful which allowed us to spend a lot of our time relaxing and playing on the beach.  It was a nice end to summer before jumping back into the school schedule.  Below are a few pictures and we will add a few more to another post

Here is the view from the house we stayed in at the coast.  Just cross this little road and we were on the beach.  Easy access for us to spend lots of time at the beach while there. 
Here is a picture of the Smith and Bradner Kids.  Enjoying some rare sunshine at the Oregon Coast. 
John getting the campfire going and Kenzie relaxing on the beach.

**Oh, before leaving on Friday night we were delayed a bit because Jacob was attacked by a bee.  One angry bee stung him three times.  Once on the stomach, under his arm and then the worst was on his little ankle that swelled up huge.  The stinger and part of the bee was still in Jacob's ankle and we had to remove it.  Always a fun at the Bradner's house.  :)

Medicine Update

Hello All! I thought you might be interested on how Alllison is doing concerning her medication. We have been weaning her off prednisone and Aleve ( NSAID) over the last month. Below is a list of her current medications:

Daily:
Prednisone 10 mg
Folic Acid
Vitamin
Aleve ( we have completely stopped giving her Aleve since she is not experiencing any pain or swelling. As a result we have been able to stop the tummy medication she was taking because of the irritation the Aleve would cause.)

Friday Nights:
Methotrexate 8 pills
Ondanstron ( for nausea)

Allison will now hold steady at these levels until we go back to see Dr. Kingsbury in mid-September. We are continuing to pray that she will hold her own and keep feeling good now that she is at 10 mg of prednisone daily. Our bodies naturally produce about 10 mg. of cortisone ( natural steroid) daily. So, if she can do well at this level then hopefully when her adrenal glands begin to produce the steroid again she can continue doing well.

Again, thanks so much for your support, positive thoughts and prayers we truly believe that without them Allison and our family would not be doing as well as we are all. We are so blessed to have so many people care about us.

Big News

Many of you may have heard, but we wanted to post our news. John was promoted last week to chief of Albany fire department. We are very proud and excited for him and his new challenges that he will be facing. Jacob is a little bummed that dad will no longer get to drive a "wee-whoo," but I am sure he will adjust. :)

Jan

This is for Jan who posted a comment on the blog. I would love to talk to you further about your situation. Email me at bradner@profirefighter.com.

Leslie

Weather Change

Today we have had much cooler weather and almost constant rain.  Allison is complaining about her right leg feeling "weird."  Actually this morning it was her foot and by lunch her whole leg.  She caught my attention of course.  She says it feels tingly.  I'm not sure what that means but we will keep and eye on her and hope it doesn't develop into anything else.  With the abrupt weather change I just kinda wonder if it could be effecting her a little.  Keep her in your thoughts and prayers that it isn't anything.Publish Post

McKenzie River Rafting Trip

Last Saturday we had a girls day out adventure.  We went with Kenzie, Mayzie and Kristi Smith, and Kristi's mom, Nancy rafting on the McKenzie River.  It was a steaming hot day (100 degrees) and a perfect day to be on the river.  Kristi's mom's church in Eugene sponsored the event.  We had so much fun.  Everyone on the river carries water guns so for a good share of the day we spent having water fights with other boats.  We were ambushed by  river pirates on several occasions and managed to fend them off with our water guns.  Kenzie was our fighter and on a couple of occasions all of us in the boat would be holding up peace signs so other boats wouldn't fire on us  and she would begin squirting them with water and the fight would be on.  Because of the heat it was very enjoyable getting wet and the hot air quickly dried us out.  Allison, Kenzie and Mayzie took turns "riding the bull." Which means riding on the front of the raft with your legs hanging off while going through rapids and trying not to fall off. Our guide was wonderful and full of stories and fun.  Kenzie pushed him off once for spraying her mom ( a little protective I think) and then he just abandoned us another time.  Oh, and I did push Kenzie off one time when she wouldn't quit instigating fights with other boats.  Cooled her off a bit.  :)

We ended the day soaking wet, tired and happy after having a fun filled day.  To top the day off we made a quick stop for chocolate at See's Candy and had dinner out.  We may have to make this an annual event.  But I am thinking the boys may want in on some of the water fights and pirate action next year.  Ahoy Ye' Maties!!!! 

Leslie

Blood Test Results

Last Thursday I went to the drs. office and got a blood test. They said that I need to come in at least every other month to get one. Today we got back the results for my blood test. They were really good. It said that my blood was doing really good. So I might end up growing out of JRA and not having to take medicine that you have to have shots with. That makes me really happy because I really do not want to have medicine that you have to have shots for, and I really would like it if I grew out of JRA. 50% of kids with Systemic JRA grow out of it. I hope that I'm lucky enough to be one of those kids! My mom will include my blood test results later.

This week me and Jacob have been doing Vacation Bible School at our church. It has been really fun! I am in the blue group and Jacob is in the yellow group. Today Jacob brought two friends. They were Mitch and his friend Grady.

I have been riding my bike so many times each day. I probably ride it two hours each day or maybe more. I think that riding my bike is lots of fun. I probably will keep doing it every day for a long time.

That's about it. Thanks for checking in.

Allison

**Key Blood Test Results**
Sed Rate (ESR) 0 (normal 0 to 20) Last blood test on June 11 this was 91.
C-Reactive Protein (CRP) 1 (normal 0 to 4.9) Last blood test this was 125.2.
White Blood Cells (WBC) 9.0 (normal 4.0 to 13.5) Last test this was high.

Keeping our Fingers Crossed

We are keeping our fingers crossed that all is going to continue to go well for Allison. She went in on Thursday to see our local doctor and to have blood work done. We should hear tomorrow (tuesday) the results of the tests. We are anxious to see what those tests will show us on how she is doing with her blood counts. We will be sure to post results to let you know.

Sunday afternoon Allison started not feeling so well. She felt pretty sick to her stomach so we ended up giving her an anti-nausea medication and after sleeping for awhile started feeling better. We are thinking the methotrexate she takes on Friday night must have effected her this week. It hasn't caused her any issues the previous two weeks, so we were a little surprised that it made her feel poorly this week.

Monday morning Allison woke up and complained that her neck was stiff and hurting. Instantly she got my attention. She went ahead and took her normal meds. but I am watching her carefully today. This afternoon it is still bothering her but she said it seems to be improving. I am hoping and praying it is just a kink in the neck from sleeping wrong, but since we dropped her down to 14 mg. of prednisone on Friday I am on alert watching for break through symptoms. So, our plan is to watch her and see if we see anything else develops tonight or tomorrow. If it continues or additional symptoms arise we can up her pred. dose again.

Your prayers for Allison's continued progress in tapering off the prednisone are greatly appreciated.

Leslie "The Mom"

How is Allison Feeling?

That is the question we are getting a lot lately.  Today at church so many loving, caring members of our church family asked about Allison and her status and about our trip to California.  We so appreciate all of you caring so much about our family.  We feel so blessed to have you praying and caring for us.  

Well, Allison is doing great.  She is currently down to 16 mg. of Prednisone  in the morning.  So far she is handling the tapering great.  We have also cut her down to 1 1/2 Aleve pills a day.  She is having no fevers, rashes, swelling or joint pain.  She is actually very active right now.  She went on a long bike ride with our friends, the Smiths, and did wonderful without any residual effects.  She is swimming frequently, taking Banzai (our dog) for walks and much more. Basically, she is doing everything she has always done.  If it wasn't for all the pills she is taking (6-8 each morning and then on Friday evening she takes an additional 9 pills) and the occasional mood swings, she would be just as before.  

We keep crossing our fingers for continued wellness and feeling good for her.  The stress level in our house has dropped tremendously and it is good to feel "back to normal."  Of course, we are still keeping a watchful eye out for signs of breakthrough symptoms as we know we aren't out of the woods yet, but each day that passes that she is continuing to feel great is a blessing and an answer to prayer for us.  

*** Still fighting with the camera, don't give up hope for the vacation pictures.  I promise to try and conquer it early this week.  Computers and camera can just be a pain to make them talk to one another.  :) 

What's Up???

Hello Everybody!!
We are trying to get our trip pictures on the computer to post, but we are having some technical difficulties. Hopefully those will be resolved very soon. Life is falling back into the summer routine since returning from the land of Disney.

Mitch last Wednesday became sick and missed the rest of his hockey camp on Thursday and Friday. We finally took him to the doctor on Monday and they said he had infection in the back of his throat and a sinus infection so he is on antibiotics and seems to be showing improvement. Sadly, he was sick on his birthday Saturday. A bummer to be sick on your 15th birthday. He was also banned to the upstairs of the house when he was running the fever to try and keep him away from Allison. The medications she takes compromises her immune system so she can easily get sick and can not fight off the infections. So far, she is still healthy and doing great.

Thursday John, Allison and Jacob are going fishing with our friend Kevin and his son Nick. I am sure there will be many stories to post after this trip. Both Allison and Jacob are so excited.

While on here I will post a cute Jacob story. He was a little freaked out by the Haunted Mansion at Disneyland. The other day he was talking about it and trying to tell me it was real and that he had dreamed about ghosts in it while we were at Disney. I was trying to convince him it was just pretend and not real when he said, "Mom Disneyland is the place where all your dreams come true. If you dream it there it will come true." Disneyland's theme right now is "Place of a Million Dreams," and they talk about your dreams coming true there. I then tried to tell him only good dreams not scary ones, but he was quick to point out it doesn't say that only good dreams come true! How do I fight that literal logic???? He is amazing how he puts things together sometimes.

Hope all is well with everyone and you are enjoying the warm summer days.

Great Doctor's Appointment

Allison had a great Dr. appt. today in Portland. He could find no evidence of active arthritis going on and from how she has been feeling it looks like the medication is working for her. We now are going to try to wean her off the prednisone. She is currently taking 20 mg daily and we want to try and get her down to 10 mg before her next appt. in September. Since she isn't having any joint pain or swelling we are also going to try weaning her down from the Aleve she is currently taking to give her stomach a break, if she will tolerate it. She is still taking Methotrexate and we will up her dose a bit this next week and then hold and see how it works for her until the next appt.

We will have to monitor Allison closely and watch for warning signs like break through fevers, rashes, morning stiffness and joint pain. If those begin to occur we will have to back off the tapering of her medications. It is a guess and check game with her medication right now.

At the conference we learned that 50% of Systemic JRA kids out grow this disease during the first year. Dr. Kingsbury said his experience is usually 2/3 's out grow the disease in 2 years. Our hope and prayer is that Allison would be one of those. Right now we are cautiously optimistic about her out come and how she is doing.

We so appreciate your good thoughts and prayers during the last 6 months. They have helped to get us to where we are today. Please continue to keep us in your prayers as we see how Allison's body tolerates tapering from these medications that have helped to make her feel so good.

Leslie

**Allison was also thrilled because she did not have to have bloodwork today. Dr. Kingsbury wrote standing orders for her to have her bloodwork done at our local doctor's office which Allison feels most comfortable with. A blessing for her.

Home

We made it home Saturday evening and have been trying to get back into the swing of things here at home and back into a routine.  Banzai ( our dog) was thrilled upon our return, but I think he is missing all the attention he got from Allie and Kayla.  They did a great job caring for our animals and home while we were away.  We came home to a sparkling clean pool! Thanks so much girls.  

John went back to work on Monday and Mitch started hockey camp in Eugene for the week so we are making trips down and back to get him each day.  Not fun for us being in the car but he seems to be enjoying it I guess.  He was walking a little slow and stiff legged this morning and wanting Advil.  :)

We are working on organizing photos so we hope to post some very soon.  Today we head to Portland for an appointment with Dr. Kingsbury Allison's Pediatric Rheumatologist.  We are anxious to see what he says about her progress.  She is complaining of a foot "cramping" or "locking up" it has now done it several times we are hoping it is a kid thing and not a jra thing.  

We will post how her doctor visit goes tonight or tomorrow and I am sure Allison will want to post when we get some pictures up here.  :)

Leslie

Headin' Home

Hi All:
I am writing a quick post for Allison. She will write more details later. Yesterday was our last day in Disney. We spent most of the day doing those last rides and things we hadn't done, shopping and riding one more time on some favorite rides. By 11:00 we were all exhausted. Yesterday was Disneyland's 53rd birthday so it was fun to be there for the excitement.

We are packing up and getting ready to head up I-5 we are planning two long days of driving so we can get home on Saturday and have Sunday to unpack, cleanup and rest a bit before John heads back to work on Monday and Mitch starts hockey camp.

Allie and Kayla have been house sitting for us and it sounds like things have been going great. Banzai I am sure will be spoiled when we get home. It has been nice having them take care of the house and animals so we don't have to worry about them. Thanks girls!!!

Well, gotta run and finish up my last minute jobs before we head out. We are hoping for less excitement on the way home than we had coming. Oh, and we will post pictures once we get home. We forgot to bring the camera cord.
Allison will write later with her account of what has been going on. :)

Leslie

Disneyland/California Adventure

We went to California Adventure and had lots of fun. Some of the many things we did was California Screamin, The Tower of Terror, Soarin' California, Toy Story Mania and Maliboomer.
The Maliboomer you get into seats and then you go up 1000 feet really fast in the air and then you come back down. When you start to come back down you feel like you are flying in the air because your bottom comes off the seat. The Tower of Terror is a ride where you go into an elevator and there are a few rows of seats and you sit in the seats and they take you up to the top and then they drop the elevator down and then it goes up and down fast. When I did it my feet came a couple feet off the ground because we were going so fast. Toy Story Mania is a brand new ride where you sit in cars and you go around and you have a shooter gun and you play different games. Our whole family really liked this game.

We saw some shows there: Aladdin, The Muppets, Golden Dreams and two parades. Golden Dreams was a short movie with Whoopie Goldberg in it where she would explain about how California was started and all the different things that happened in the forming of the state.

We also went on a ride called the gondolas. You get into gondolas and it is on a ferris wheel and the gondolas slide me and Jacob thought it was really fun but Mitch got scared.

One of my favorite rides in Disneyland was Splash Mt. My whole family really liked the Winnie the Pooh ride and we went on it lots of times. We went on the Finding Nemo Submarine ride really late at night. We had to wait in a very long line and I almost fell asleep in line, but it was worth it. We met Pluto and saw Cruella Devil but didn't get her autograph because her smile was very frightening.

We have one more day in Disneyland an lots to do. I can't wait to get home and back into our house. I hope I am able to remember Disneyland this time. Last time I forgot everything about it.
Allison

First Day of Disneyland

Yesterday was our first day at Disneyland. In the morning, we had the conference and then after that we came back to the trailer, had lunch and a nap, and then went to Disneyland. It was a fun conference, I liked it. Next year's will be in Houston, Texas. We may go.

The first thing we did when we got to Disneyland was we saw Goofy and got his autograph. Then we went on Star Tours, which is a Star Wars ride where you sit in seats like you're in a space ship and they move the seats so it feels like you are actually in space moving around. My favorite part was the light speed where you go really fast and it actually felt like I was going to fall out of my seat.

The next ride we went on Space Mountain. Then we went on the Autotopia where we got to drive cars. It was kind of hard, you were on a rail but you had to turn the car and if you didn't turn the car it would turn itself but it would make it really bumpy, and I had to drive. Then we went on the Matterhorn and then went to Toon Town. While we were at Toon Town we went to Mickey's house and got his autograph. We also went on the Roger Rabbit ride. Ever since I went on the ride, I've been wanting to see the movie, Who Framed Roger Rabbit.

Then we went on the train and headed over to New Orlean's Square and went on the Haunted Mansion. Jacob got super scared and hid in my dad's shirt the whole time! I got a little scared too, but it was still fun. After that we went on Pirates of the Carribean and the Winnie the Pooh ride. We also did Indiana Jones and Thunder Mountain Railroad. The line for the Indiana Jones ride was super long and it felt like we had to wait for hours. Once we finally got inside, we had to wait in another long line to get to it. One of the reasons it took so long is that they have a thing called a fast pass where you can come back during a specific time and lots of people were doing that. And they get to go to the front of the line. Once we finally got up there, the ride was really fun. We got to one part where Indiana Jones was hanging there trying to get into the temple and then the big huge rock started rolling towards us and then it looked like it would roll on top of us but then we went under it. We also went on the Jungle Cruise. It was really cool. The animals were fake, but the guy who did it acted really funny and made it look like it was real. That was our day at Disneyland. I had a lot of fun and I can't wait until we go again today.

Allison

The Conference

Today was the first day of the JRA conference.We have to check in at 8:45.They also give you breakfast from 7:30 to 8:45.Then we are seperated into age groups.I am in the ten year olds goup.We played lots of fun games like colors, would you rather, and truth or dare.I didn't play truth or dare because i don't like that game that much.We also did crafts.I made a lei and i colored a surf board.After that we got to go swimming but i couldn't because we didn't know we were going swimming so i didn't bring a swimsuit with me there i left it in the trailor.So i sat and watched them swim.It wasn't that fun.At twelve we met with our family to have lunch.My family didn't want to go all the back to the trailor so we went to red robin.It was really yummy.

After lunch we went back with our groups.First my group went and did yoga.It was kinda wierd but relaxing.Then we went ant played with some paint.We then did some more games and crafts.The teenagers who have JRA came and we asked them questions.One girl said she was diagnosed with JRA one year after she was diagnosed with cancer.I thought that that must be a lot to handle.At the end we got to go and see some little sea creatures.I got to touch a shark.And that was the day.Later that night we got to go to a place called Boomers.It is a place where we can play lots of fun games and go on a couple rides.It was lots of fun.

Allison

We Made It

We finilly made it.We are at disneyland.I am so happy but we can't go to disneyland and go on rides till the conference ends.Witch will be sunday so we will go to disneyland on either sunday or monday there for five days.My family is very happy that we made it.

I puked five times this morning it was really grose.My stomach still hurts a little but i don't think i will puke agian for a while.I have been craving mcdonalds the whole day and i havent eaten any thing all day except a couple ritz.

I can't believe we finilly made it.

Allison

Worst Fever Ever

Allison woke at 5am with a 105.6 fever. She wanted me to title this entry "Worst Fever Ever" because it is her highest recorded fever. She threw up at 8am and then again at 8:40 am. We have a call into Dr. Kingsbury and are waiting to hear from him. We aren't sure if this is because of a flare, tapering the prednisone or maybe a bug she has picked up somewhere.

We are in Pismo beach and were planning on leaving early this morning to head to our campsite in Anehiem. But now, we are waiting for things to settle down for Allison before hitting the road and hopefully hear from the doc. The conference starts this afternoon/evening with activities hopefully we will be able to make it there.

Your thoughts and prayers are greatly appreciated and we will keep you posted on how Allison is doing today.
Leslie

Road Trip!

Yesterday we went on a hike through the woods and I got a lot of good pictures. Then we also went to a tree that people can drive their cars through, but we couldn't drive through because we have our trailer and our car was too big. The also had two tree houses right next to the big tree and we also went inside those. One of them had a second story. They were really cool! After that we went and drove down the coast. My mom and dad decided that we should drive until 8 and then look for a place to stay the night. When it got time to find a place to stay, we couldn't find one. After a while we found one but it was very crowded and we didn't know if we would stay. We had to drive by all of the trailers to see if there were any spots available. There we a couple of spots we could have stayed at, but the place was too crowded so we decided to find a new one. It was hard to leave because there were so many trailers and it was hard to turn around, so we had to unhitch the trailer and then we finally got out. We kept on looking for places to stay but we couldn't find one. We ended up spending the night on the side of the road. It wasn't that much fun, but it was free!

Today we woke up and drove for a little bit and then when we were driving by a beach we saw lots of sea lions and I got some good pictures. We got down to San Francisco and got to the Golden Gate bridge and were about to go across but decided to eat lunch first. While we were eating lunch, a park ranger drove by and we asked him where the best place was to get some pictures of the bridge and he told us that it probably wouldn't be smart to go into San Francisco with the trailer because of the traffic. So we ended up taking a different route and not going over the bridge and into San Francisco. But at least we got to see it. Then after a while we started to run out of gas so we went into a little town that was kind of scary, looking for gas. But when ever we found a gas station, they didn't have diesel so we had to look for a different one. It was really scary because we were almost out of gas and we were kind of lost. But then we finally found a gas station with diesel. Then we had to try to find our way back to hwy. 101. We then drove to about 7:30 and started to look for a place to camp. It was a little hard getting into the camp site with the trailer, but we made it work.

When we get home, I'll put some pictures on here of our trip. I can't wait until Disneyland. It's going to be lots of fun!

Allison

The bear

Hi I forgot to say in my other post that we saw a bear at our camp site.It was a huge black bear.At this campsite peaple see lots of bears come and catch fish by the water.I wonder if we will see any more.Today we are going to be driving about 5 to 6 hours then stop and camp for a night.

Allison

First day of our trip

Today was our first day of our disneyland trip.We left at 10:35 and drove till 5:45.It took us a while to leave because we still had stuff to do to get ready and mitch woke up late.We decided to stop and camp in the red woods.We are at a very nice camp site.It has a beautiful view of a lake where peaple can go fishing.We had dinner then played a board game.We also got to roast marshmellows.They were really yummy. I have started reading the first Harry Potter book and I love it. I am half way done with it.Today has been a fun first day and i can't wait for tommorrow.I will write every day and tell you what i do the notes won't be that long because right now mostly what we are doing each day is driving.

Thanks for reading
Allison

Trip Delay

If you are checking in here thinking you want to see how our trip is going so far, I'm sorry, we haven't left yet. We are planning on updating the blog on our trip that was suppose to begin yesterday (Saturday).  Well, we ran into some issues.  I developed a UTI and spent 1/2 the day Saturday at Urgent Care and getting meds. and the rest of the day in bed.  Jacob has been running a fever for the last 6 days, we keep thinking it will go away, but it isn't.  Early thing morning he began to throw up.  He has thrown up twice now.  John is now at Urgent Care with him.  We are giving them some good business this weekend.  

Both Allison and Mitch are thinking we aren't even going to make it to Disneyland.  Our hope if things go well for Jacob is to leave later today or early Monday at the latest.  I'm not sure what it is with us and trips and getting sick.  They seem to go hand in hand.  At least this time we are sick before we leave the comforts of home.  

Luckily we also have allowed  extra time on the way down so that we could camp and take our time.  We don't have to be at the jra conference until Thursday so we are still doing OK.  

Your positive thoughts and prayers would be greatly appreciated.  Hopefully very soon, we will be hitting the road.  

Leslie

Almost Disneyland

It is almost saturday and that means disneyland time.I can't wait it will be so exciting.I was thinking of saving my money to buy a ipod but then my aunts husband gave me his old one because he didn't want it no more.It holds more songs than Mitch's does.It can hold movies,music,t.v shows,games,music videos and photos.Now i have something fun to do on the way down there.I also have work from school that i never got to finish while i was gone so i made packets of the papers so i could work on them.My mom and dad are thinking of buying me a digatal camera so i can take pictures of disneyland.Cause last time when i went i didn't take much pictures and i was 5 so i don't remember.

My dad is bringing his laptop so i can write on my blog about what we are doing.I hope you all have a great summer.I know i will.

Allison

Safety Camp

Last week i went to safety camp.It is a day camp that kids can go to have fun and learn safety.Kenzie Smith did it too she was in my group.Our group was the orange group.Mitch and Grady were two of our leaders.It went from Monday to Thursday.

Monday we played lots of games outside like tag or car lot.Then each group made their own picture in a square outside with chalk .My group won the prize for most chalk used.Well because we used up the whole square and made a monkey because our group name was the orange monkeys.We also learned about water safety, life jacket safety and another one i forgot witch one. Then we got to go swimming at the community pool.

Tuesday we did the same stuff exept we learned new safety stuff and we didn't do the chalk thing.

Wendsday we went on a field trip to OHSU to go rock climbing.It was lots of fun.We also went to the gym and played dodge ball,basketball and tennis.The wall I climbed on rock climbing was hard because it was really bumby so i only got up the wall a little bit.When we were done with that we got subway sandwiches they were really yummy.After that we went to otter beach to go swimming.I spent most the time in the whirl pool.It was fun.

Thursday we did the same stuff learned some safety tips.Did the firefighter challenge and the police challenge.Those were fun.Then at four we had the graduation.Each group had to do a skit about what we learned.My group did a skit on the police challenge.I thought we did really well.

That was my week at safety camp.I can't wait till next summer so I can do it again.

Allison

Update on Allison

Allison has been on the Prednisone for two weeks as of Friday.  She started out with 60 mg a day and now we have tapered her down to 30 mg a day.  We will continue to slowly taper her down and hope that her body adjusts and holds it own.  She could have a flare as we taper down so we monitor how she is feeling closely and keep praying that all is well.  As we are tapering her down from the Prednisone we are increasing her Methotrexate.  

Allison continues to feel well and the fevers, joint pain, rash are gone.  She is doing most of the things she has always done.  She does tire easily and has to rest at times, but it is so much better than how she was doing.  Allison also has gained 8 pounds.  The Prednisone is definitely increasing her appetite.  We are going to work on that a bit and try focusing on making healthier food choices.  It is another mind set change for her, because for so long we let her eat anything just to get calories into her shrinking body.  Now, we have to try to slow it down but she is wanting to eat all the time from the Prednisone. 

We are all excited because we leave July 5th for vacation and Allison should do very well since she is feeling so good.  We  had all been very concerned about how she would handle it mentally and physically but now it should be fine.  Everyone is excited to go to Disneyland.  I am sure we will keep the blog up and update you as we travel as to our adventures.  

Lastly, we continue to be so greatful to our family and friends ( old and new) who reach out to us and to Allison with love, support and mostly prayers.  Thanks to all of you who touch our lives in so many ways.  We appreciate you so much.  

Leslie

 "The Mom" 

JRA Camp

Last weekend we went to the JRA camp.It was lots of fun.Every family got their own cabin with a bed for the mom and dad and two bunk beds.At meals everyone would meet in the dining room and have their meal.They made really good food there was bacon,salad,bread,cake and lots of other stuff.The kids would be seperated into age groups.So we weren't together but it was okay.Each group got to do one really fun thing.My group got to go horseback riding.It was lots of fun.One night they had a hawaiian band play because the theme of the camp was Hawaii.The next night they had a talent show and a fashion show.Each group had to do something together for the talent show.I couldn't do it because i didn't feel good.So i sat with my mom and dad.Mitch's group did a really funny thing.They had one kid pretend to be a reporter with nothing to write about and lots of other people with jobs they couldn't do then they all got together and jumped off a fake bridge but the reporter pretended to but didn't then when all the other people jumped of the bridge the reporter said,''wow ten people jumping off a bridge what a great story''

They also had a bon fire.Everyone roasted marshmellows and told scary stories.It was really fun and yummy.Jacob made a friend that is about his age.They live in salem so their pretty close by.But it was funny Jacob just went up to the kid and said hi your my friend now and then they were friends.We had to leave but we defently will go back next year.

I'll have mom post some pictures from camp later. 

Allison

WOW!! Hard to believe

Well, the prednisone is an amazing drug.  As a friend whose daughter has systemic jra said to us, "It is a love/hate drug."  Well, right now we are experiencing the love.  It is like we have our daughter back again!  I can't believe how quickly it has taken effect in her.  Yesterday, Allison and I went shopping for about 4 hours.  We took a few breaks to rest but we walked and shopped and just had a great time.  For her to be in a store 30 minutes has been pushing it until now.  Last night we all at dinner together. Most evenings by dinner Allison is feeling so tired and in so much pain she eats lying on the couch.  We all sat at the table outside together and enjoyed the weather and Allison being with us and feeling good.  She was up until about 9:30 and feeling just great, smiling at bedtime (definitely not the norm).  No pain, no exhaustion.... it is almost scary.  We know there are side effects we have to be cautious of with this medication but, I can't even tell you how happy we are to see her enjoying life again and just being a kid. 

We are praying for minimal side effects and that once we start to taper it will not be too difficult for her.  It will be nice for her to be able to enjoy the summer and great since we are headed to the JRA conference and Disneyland in a few weeks.  

Thanks to all of you for your prayers and concern for Allison.  We really appreciate you all.

Finally Pictures of the Quilt!!

Here are pictures of the quilt Mrs. Bailey's 5th grade class made for Allison.  We have promised the pictures for awhile now, sorry it has taken us so long to get them on the blog.  

Allison holding the quilt folded in half.  Each student made a square of the quilt and dyed the fabric in their square.  The colors are amazing.  

Here is Allison and Jacob holding up the backside of the quilt.  It has monkeys doing gymnastics.  Allison loves it.  She likes monkeys very much and loves to do gymnastics so it was the perfect combo.  The fabric is also a flannel so it makes it extra cozy.  At the top by Jacob's hand you will notice where Allison's name is sewed into the quilt.  We hadn't even noticed that until we were taking the pictures.  Very cool!!

Here is the quilt layed out and you can get an idea of all the wonderful colors and blocks the kids made.  The quilting is very detailed and beautiful.

                             It is kinda hard to see but here is the back and the crazy monkeys.

This quilt is so special to Allison and to our family.  It will be something she will treasure for a lifetime.  Thanks again to all the students who took the time and care to make this quilt for Allison.  You are all AWESOME kids!!!!

Doctors, Doctors, and More Doctors

It has been three long days for the whole family making multiple trips to Portland and stressful decisions about changing Allison's treatment and switching Pediatric Rheumatologists.  After three doctors' appointments, three days in a row for Allison, I think she is ready to "throw in the towel." Here is a "brief" run down on what's happened over the past few days and a synopsis of where things are heading with Allison.

Today marks the beginning of the 22nd week of Systemic JRA for Allison. (148 days for those who are keeping score at home.) This past weekend, Leslie and I (yes this is Allison's dad making my first post on the blog) both expressed significant concern regarding Allison's situation with her fevers continuing daily, no lab work to tell us how she's doing, and no scheduled visit with a doctor for at least another three weeks. So we decided that this was going to be the week to focus on making some things happen. On Tuesday I contacted her primary care physician, Dr. Irvine and "spilled my guts" regarding our concerns; he got us in the next day, on Wednesday, for an exam and a full set of labs. Also on Tuesday, we got in touch with Dr. Kingsbury's office at Emanuel Children's Hospital, the only other Pediatric Rheumatologist in Oregon, and requested an appointment. They were very accommodating and were able to squeeze us in today. In addition, Allison had a previously scheduled appointment with her pain management specialist at Dornbecker's, also located in Portland. 

On Thursday we received the results of Allison's blood test. Her inflammatory markers were all still very high (Sed Rate of 91 (0 to 20 is normal) and CRP of 125.2 (0 to 4.9 is normal)). Her liver function tests were normal (this was a concern of ours because of her being on Methatrexate), and our PCP was also very concerned because she was so anemic. He suggested some changes to her Aleve and adding an iron supplement to assist with the anemia. Unfortunately, as Dr. Kingsbury reminded us today, Allison's anemia is related to her inflammatory disease and is to be expected. Any supplemental iron will unfortunately not do anything to change her anemia. 

Thursday's appointment at Dornbecker's went well. We utilized some "extra" time at OHSU to do some research at their medical library (thank you Brian for your assistance with this). There's a lot to learn about this disease and unfortunately limited material to review. 

Friday's appointment with Dr. Kingsbury went "well." Allison was not feeling good so this unfortunately made the appointment more stressful for all of us and an uncomfortable and painful experience for her. Half-way through the appointment, Allison couldn't stand it any longer, so Leslie took her to the van to lay down while I finished up the meeting with the doctor. All total, he spent over two hours with us, answering our questions and defining his course of action for her care and treatment. The end result is that we now have a new Pediatric Rheumatologist for Allison and her medication list has grown substantially. As of this evening, she is now taking Prednisone, Methatrexate, Folic Acid, Aleve, Forzofran, AcipHex, and a daily vitamin. And the wait begins to see if the Prednisone will control her fevers (this is the only medication that may possibly impact the fevers), and to see what negative side effects she will have to deal with as a result of taking it. 

So, Allison went to bed with a 100.4 temp tonight. After about 90 minutes of sleep, she just woke up all sweaty as her fever had broke for the evening. 

The next few days will be interesting. We're praying for a significant change in her condition and an easy weaning off of the prednisone. I'm sure that no one is more tired of the daily fevers than Allison. For her sake, I really hope that this portion of the disease process will end soon. Unfortunately, who knows what's coming around the corner once we move past her current situation.

Sorry about the length of this message. A lot has happened rather quickly for which Leslie and I are both thankful for. Keep praying and we'll try to keep everyone posted as things progress.

John 

JRA Convention & Disneyland Trip

The national JRA conference is in Costa Mesa, California in July. We had considered attending months ago but then decided Allison's condition wasn't stable enough yet to go. Well, through a series of events we have been offered a scholarship to assist us in paying for the trip from our local Arthritis Foundation Organization. With the convention being so close to us and Allison's condition stablizing somewhat, this became an offer we couldn't refuse. A big plus for the whole family is the convention is very near Disneyland.

We have many concerns about Allison being able to handle the trip and travel so we have decided, as a family, to make the trip longer and to take our trailer. This will allow us the flexibility to go at a pace that Allison can tolerate, to stop when needed, and not be tied to airline tickets. It will also allow us to take with us many of the comforts from home that Allison needs. Allison will have to do Disneyland at a slower pace and take frequent breaks, but with making a careful plan, we think it can be a fun experience for all of us.

Keep us in your thoughts and prayers as we prepare for this trip that Allison will stay healthy and continue to improve. We will be putting more details on as the time gets closer.

Only 1 1/2 days left of school!!!!

Doctors Appointments:
I forgot to mention Allison has 3 doctors appt. now scheduled for this week.

1. Wednesday - she will see our regular doctor, David Irvine for blood work
2. Thursday - she will see the pain doctor in Portland
3. Friday - we will be seeing Dr. Kingsbury in Portland for a second opinion. He is the only other pediatric rheumatologist in Oregon. We are happy they are able to get Allison in so quickly.

New Additions

On Allison's blog you will find some links that are new. The first section contains links to blogs of other JRA kids we have become connected to since this journey has begun. You might find it interesting to see what other kids are dealing with.

The second section has links to JRA resources. If you would like to learn new information or some additional information about JRA and what is going on with Allison and other kids that have JRA, some of these sites are very informative and helpful. CARRA is a group made up of pediatric rheumatologists around the country. The National Arthritis Foundation site has lots of information as well as the local AF site that is also listed. We will add more links in the future.

Mrs. Bailey's class surprise

Sorry to keep you waiting to learn about the surprise I got this last week. I kinda forgot about it and then in the evenings I haven't been feeling as well, but I did make it to school all five days this week.

Last Monday Mrs. Bailey's fifth grade class at my school gave me a surprise. They gave me a quilt that they made. Each student made a square on the quilt. They dyed the fabric different colors. It is very colorful, comfy and I love the monkeys that are on the flannel on the back of the quilt. The quilt is beautiful and I was so surprised. They made a book for me that had letter in it from each students. I really like the book and like to read the letters they wrote. On the front is a picture of their class holding the quilt.

Each year Mrs. Bailey's class makes a quilt and gives it to someone in our community. They decided this year to give it to me so it was very cool.

I know Mrs. Bailey's class checks my Blog so, I want to Thank them making the quilt for me and writing the letters. They are both very special to me. Thanks for the encouraging and nice things you wrote in the letters.
THANK YOU
MRS. BAILEY'S 5TH GRADE CLASS!!!!!!!!!!!

I will post a picture of the quilt and me tomorrow. I am not feeling great tonight. Friday, Saturday and tonight I have ran higher fevers again. I feel good during the day but feel bad at night.

Thanks for reading my Blog!
Allison

Quick update

Hi!
I thought I would do a quick update for Allison. The end of last week was rough for her. She felt well over the weekend and she has gone to school all three days so far this week!!!!! She is feeling good this week. She is very tired in the evenings and sore but doing great during the day. We are hoping that maybe the medication is finally kicking in and helping her.

Monday the fifth graders in Mrs. Bailey's class presented Allison with an amazing surprise. I can't tell what it is because she wants to write about it and post pictures. It definitely lifted all of our spirits.

She is feeling so good tonight her and I are going to West Albany's Graduation to see our dear friend Allie graduate from high school. We weren't sure Allison would make it but so far tonight she is feeling good and really wants to try so we will give it a shot. It is so nice to see her feeling good and doing "normal" life activities.

Well, gotta go and watch the hockey game (Stanley Cup: Pittsburg vs Detroit) for John. He is taking Mitch to his hockey game in Portland, and of course the games are the same night.

Watch for Allison to update soon to share her surprise with you.

Leslie
"The Mom"

My birthday & Stuff

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.

Allison

Ups & Downs & Birthday

Hello Everyone!!

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"

More Pictures

Jacob enjoying the big bounce toy

Jacob and Kathleen on the Carousel
Kellie and Allison on the playground after the walk

Pictures from Arthritis Walk

Team Lightning 2008

Allison and Kenzie before the walk

Allison during the Arthritis Walk

Blue hat means she has arthritis

Mitch, Kellie and Grady during the walk

Grady and Mitch capturing the balloons after the race

Arthritis Walk Saturday May 10th!

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.  

Allison

Friday Update

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"

Walk is Tomorrow

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!

Allison

* I will let you know how tomorrow goes and post some pictures too.

School

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.  

Arthritis Walk Saturday May 10th!

Sunny Weekend

Hello All!!

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.  

SURPRISE

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.  

Allison 

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. :)