Another year had gone by

It is hard to believe another year has past. Allison is still in a non-medicated remission and doing amazingly well. This disease does continue to remind us it is still around on occasion. We have learned that when Allison becomes sick with a virus/flu it takes longer for her to fight it off, her joints will ache and sometimes swell when she is ill. When the weather changes she seems to be achey and sore but so far Aleve seems to controls those issues when they arrive. Her body sometimes acts funky and we aren't sure why, but figure it is something with her immune system. In the spring she dealt with breaking out with rashes on her legs and feet each time she showered. The rash was very red and would hurt and burn for up to 30 minutes and then be gone. So, what we have learned is we listen to Allison and her body. We treat symptoms as they occur and document it all. Luckily, nothing has been severe enough to return to the rheumy or to cause great concern. Allison is good about sharing how she is feeling and we encourage her to tell us when her body is giving her cues that something is not right or going on.

Talking with Allison the other night around the fire she confided in us that when she was first diagnosed and so sick she really believed she was going to die. :( Makes me sad to think she thought that. It was a scary time for all. We were telling her about MAS (microphage activation syndrome) that can effect kids who are diagnosed with Systemic JRA and that it can lead to death at times. She told us she was glad we never told her about that because she was scared enough without knowing about MAS.

Our journey with jar continues and thankfully God has blessed Allison to be in good health right now. We do not take that for granted and feel blessed each day she feels good. Especially when there are so many kiddos out there that suffer so much daily with their symptoms from this terrible disease. A cure must be found!!!

My Birthday & Stuff

It has been a very long tim since i have written on here but i was bored and i remembered that i have a blog and i decided i should post something. I saw my posted something back in January. Last Wednesday was my birthday of course my mom made me go to school i really didn't want to though! It was nice though because at my school Timber Ridge every other Wednesday we have a early release so i got to go home two hours early. When i got home my family and I went out for an early dinner. Then me and my mom went and got a cake from Cold Stone. When we got home I opened presents and i got a tetherball kit, 2 DS games and a charger because i lost mine! I also got 2 webkinz( i now have 10 now!) And i also got the movie Princess and the Frog! Earlier that day at school my dad sent me flowers to the office which i got at the end of the day so i also got those to. It was a fun birthday and i will have a friend birthday next weekend. It is exciting i am now 12 and my mom will finally let me sit in the front seat of the car!!!!!

Allison:)

Two Years Later...

Wow, I sat down and looked at this blog today and it has been so long since anything has been written. Yes, that is a good sign. It has been two years since Allison first became ill. So hard to believe that so much time has gone by. Allison is doing wonderfully. She is completely off all medications!!!!! Huge Praise. We do not have any doctor's appointments scheduled for the future. If the need arises we can then contact Dr. Kingsbury for assistance. Allison is now leading the normal life of an eleven year old girl. Something for which we are very thankful.

There are times when we think the arthritis may be rearing its ugly head, but nothing big as of yet. She occasionally will have pains in her legs and aches here and there. We monitor her and give Aleve and so far that has worked for her. She just got over strep throat and I was concerned that might send her immune system into overdrive. A few days later she complained of tingling and a numb feeling in her legs. Fortunately it didn't last. So.... we wait and see, and monitor her. There is a chance sometime this disease could enter Allison's life again. Our doctor thinks more than likely it will not present itself with rashes and fevers but with joint issues. There is also the strong possibility the Systemic JRA has just burned itself out in Allison and she will never have to deal with it again.

Incase someone checks in I just thought it would be good to give an update and let everyone know that Allison is doing great.

If you are someone who found this through a search and need some support because you are dealing with similiar issues, please contact us. There is great support out there and available.

John & Leslie Bradner

jlbradner@gmail.com

Last Day

   I had a fun last day of school but it was very sad.It was my last day of 5th grade and my teacher is retirering.It is very sad she was my favorite teacher ever she was also my brother's teacher too.On the last day we got awards then we watched a slide show and sighned autoghraphs it was very fun i got every kids in the class except for two because they were sick. After that we had a snack potluck were everyone brings there favorite snack and most of it was junk food. Every one ate a lot of stuff.After school me and my mom and my two brothers went to Abby's pizza for lunch but i only ate one slice because i was so full of all the junk i ate.I am really sad that 5th grade is over and i am really going to miss Mrs.Bailey my teacher.But luckily most of my friends are going to the ridges so i will see them next year.I cant wait for 6th grade it will be so much fun!

Still on Meds./Feeling under the weather

So, an update on Allison is in order.  In our last post we told you we were going to take her off her meds. and see how she does.  After much thinking, praying and discussing we decided to wait a bit.  The three of us (Allison, Mom & Dad) weren't convinced we were ready for that extreme of a jump.  So, she has continued to take her methotrexate as normal the last two weeks.  We need to make the decision on if we are going to try and wean her off, take her off completely or continue status quo with taking the medication.  When we did research we found most often kids are weaned off this medication not taken off cold turkey and that usually they go longer symptom free before even weaning them.  We still have full confidence in our doctor and when the decision was made to take her off he wanted our complete agreement.  But, we have some concerns and so does Allison.  We decided it is better to take our time and not feel rushed and pressured.  So, we will keep you updated on her status.

Allison has also been sick this week.  She has missed school all week and I don't see her being able to make it on Friday. Missing school is a huge deal for her since she missed so much last year.  She seems to have a flu bug.  ( No, we are not concerned about Swine Flu at this time as she is not running a fever.)  I am concerned because the medication she takes suppresses her immune system and with being sick her immune system is compromised even more.  So, we will keep an eye on her closely even when she starts getting better.  With her depleted immune system I fear she could be very vulnerable if exposed to the swine flu.  Lots of hand washing and use of sanitizer around our house right now.  

The Arthritis Walk in Salem is coming up May 9th.  Allison has currently met her personal goal of $500 but we need to keep working on the team goal.  She is now thinking of raising her personal goal.  We currently have 11 members on her team ( Mitch has yet to register-slow poke.) If you would like to take a nice stroll along the river in Salem with us on Saturday May 9th feel free to sign up for Allison's team. 

 Check out the website at www.salemwalk.kintera.org     and click on Allison or Team Lightning.

Going off Medication??

Allison had her pediatric rheumatologist appointment yesterday ( Tuesday) in Portland.  Dr. Kingsbury checked her all out and thought she looked great.  So, where do we go from here?  After much discussion we came to the decision to take Allison completely off the Methotrexate.  This will allow us to see if the remission she is having is a drug induced remission or a "true remission."  We could continue to slowly wean but Dr. K. feels it would be better for us to try and know for certain how her body is going to react without medication.  It could take 3-6 months before we would see any issues if she was going to have any.  He seems to feel it is most likely that she will be fine and but there are no certainties.  

If she did begin to have symptoms (fever, rash, inflamed joints) we would then put her back on medication to get her immune system back under control.  This is a hard decision because Allison is doing so well and we hate to mess with that but we do not want her having to take medication if she doesn't need to be taking it.  On the way home from Portland, John and I  talked more and we are going to do some more talking, praying and research before we discontinue her meds. on Friday.  

While in Portland we visited some friends whose daughter (Courtney) was burned terribly in an accident over the weekend.  Please keep this family in your thoughts and prayers as she will be in the hospital in Portland for possibly a few months.  Her dad works with John at the fire department. It never fails to amaze me how lucky we are to be associated with The Albany Fire Department.  The people who work there are quick to rally around each other in times of crisis and need and once again have stepped up for this family.   It is a hard thing to understand unless you are a part of it.  Makes me proud and thankful to be part of this fire department family.  

Have a great day and hug your kids a little closer today.

Leslie

*** Almost forgot, Allison's blood work was excellent.  No issues at all. Whew!!!

Salem Arthritis Walk-May 9th, 2009

Come and join the fun.  May 9th is the Arthritis Foundation Walk in Salem, Oregon.  Allison has her team page up and again this year we will be called Team Lightning.  (She is very excited this year since she is the youth grand marshal.) Allison is hoping to get a good sized team together to walk and try and exceed the amount we raised last year.  If you would like to join us on the team we would all love that and it is easy to register on-line.  If you would like to donate you can do that on-line too.  You can donate directly to the team, to Allison or any team member.  

Tonight is the Kick-off party for the walk in Salem.  We will be heading up to attend the party. 

(John has to miss as he has two already scheduled meetings tonight.) I am speaking about how arthritis has effected us.  This will be the first time I have spoke about this in a public forum so hopefully it goes well.  (prayers are appreciated if you feel so inclined)

Here is the link to the Salem Walk page and be sure to look at the pictures, Allison is on there.

http://salemwalk.kintera.org

As far as how Allison is doing, she is doing pretty well.  She has had  joint aches and pains over the last week or so and a little swelling in her left knee.  We go back up to see Dr. Kingsbury (pediatric rheumatologist) on  April 14th and will have blood work done before that.  It will be good to see how her levels are doing and if they indicate any issues for her.  Generally, she feels good but at times seems to have some isolated issues. ( arm popping when throwing a softball, joint aches, stomach aches)

We will let you know how the party goes tonight.  

Leslie 

Arthritis Awareness Walk

Hello All!!

Big news around here.  We recently found out that Allison has been selected to be the Youth Grand Marshal at the Arthritis Awareness Walk May 9th in Salem.  Allison formed and had a team that participated in the walk last year and now she will be a Grand Marshal.  She is very excited about this opportunity.  If you would like to donate, we will be getting her team registered this weekend and better yet, if you would like to join the team, walk and help raise money for arthritis awareness we would love to have you come and join us.  You can become a member on her site once we get registered.  I will post the link here.  

An update on her condition is she is doing great.  After getting over her illness she bounced back and seems to be feeling good.  She recently complained of her shoulder popping when throwing a softball so we will talk with her rheumy about that when we go for her next appt.  Life is good for her and we are so pleased and feel very blessed.  

Leslie

First Illness

Hey all.  I thought I would update you a little.  Allison and Mitch have both been sick.  Mitch was sick all last week with a terrible cold but suffered through and made it to school last week.  Over the weekend he ran a fever and a sore throat developed.  The sore throat has gotten increasingly worse and I took both of them to Urgent Care on Monday ( our doctor is out on Mondays) thinking they probably both had strep, but it came back negative.  So they both missed school again today.  We will wait to see what the week holds.  

Now, for Allison specifically, she became ill on Saturday ( first time since jra diagnosis)  and ran a low grade fever with congestion, runny nose, sore throat and the typical cold stuff. She had her methotrexate dose Friday night so her immune system was at its lowest. We became a little more concerned on Sunday when she started walking stiff legged on the stairs because it hurt to bend her knees.  Since then she is experiencing a lot of aches and pains. ( Yes, in her joints too)  Yesterday, it looked as though she had a rash for a while on her leg.  ( another of her jra symptoms.)  She has been back to taking 2 Aleve a day the last two days for the aches and pains.  She hasn't had to take an anti-inflammatory drug in months.  So.... we are a little concerned and are watching her closely.  This is very normal for her to have symptoms come back somewhat when she is ill.  Her immune system is trying to fight the virus in her so it becomes more active and that can result in it becoming over active.  We are just hoping not too overactive.  

It is very common for kids with jra to have a "flare up" when they get sick with a virus or something.  That confused immune system just isn't sure what to do. Good news is, her fever has not gone up over 100!! Joint aches are not too bad and come and go.  She is in good spirits and determined not to miss more school this week. ( we will see- Valentine's Day is approaching so she has to be there for the party Friday.)  

It is comforting to know this is all normal, but it could also be a signal to us that she isn't done with jra yet.  That the remission she is having is from the medication and not because she has outgrown the disease.  So, we wait and see how things develop and keep our thoughts positive and keep the prayers strong.  I will keep you posted on how Allison is doing over the next few days.  

Sad day for the Bradner Family

Hello All:  This is our cat Lucky who has been with us for almost 10 years.  We are sad to share that yesterday we had to have her put to sleep.  We had taken her to vet earlier this month and she was diagnosed with kidney failure.  We changed her diet and gave her meds. to try and help.  She perked up for awhile and seemed to improve. But over the last few days she stopped eating and drinking and would howl pitifully.  Unfortunately, we knew it was time and did not want her to suffer.  

Lucky adopted us in Feb. of '99.  I had just had gallbladder surgery and was laid up. Allison was a little baby and John and Mitch noticed her outside around the house.  I told them, "Do not feed her or she will stay!" (not really wanting a cat right then) Well, they fed her and by the time I was up and around she was ours.  Lucky was a great hunter and always kept the mice at bay.  She was self-sufficient and would be happy roaming outside and then coming inside to snuggle.  As Allison became a toddler she would call Lucky, "My Kee-Kee Baby." Which was a nickname that stuck with her. Lucky easily moved with us from our house on Laura Lane to our present house and quickly established her authority in the neighborhood with all the other cats.  Even though she was a petite  she was strong and the other cats did not mess with her.  

She will be greatly missed for her hunting abilities, cuddling and love she shared with us for so long. 

*** Above is a favorite picture of her cuddling in a basket.