Our Daughter's fight against JRA

Madison's CW interview

2011-05-10T05:10:00.002-07:00

Back up

2011-05-10T05:10:00.001-07:00

At our last appointment we went back to where we were on the Methotrexate, she was having swelling in her right knee and ankle :(

Good news!!

2011-02-06T18:47:00.000-08:00

We recently had an appointment with Dr Huttenlocher and we were able to reduce her Methotrexate dose by 20%!!! Yeah!!

Now we just have to worry about reducing it..

Always something isn't it!!

Jeff

Bone Bash 2010

2011-01-26T05:26:00.001-08:00

Wow this post is late!!

Sorry for the delay, I thought that I had made one but I didn't.

On October 23rd we held the First Annual Bone Bash in Sauk City. We were lucky enough to hold the dance at the St Aloysius church gym!

Nearly 200 people attended the dance and we raised nearly $3000 for Arthritis!

Thanks to all who attended, it really was a great time!

Addie made the paper!

2010-10-13T08:06:00.000-07:00

Our local paper did an article on Addie, you can read it here:
http://www.wiscnews.com/news/local/article_c2df044a-d152-11df-a8c2-001cc4c002e0.html

Representative Baldwin talks about Our Daughter

2010-09-23T09:43:00.000-07:00

Representative Baldwin talking about Our Daughter in her opening statement at the Committee on Energy and Commerce meeting on 9/23/10.

Thank you Representative Baldwin!

Meeting Representative Tammy Baldwin

2010-08-17T16:36:00.000-07:00

On August 11 we were very lucky to be hosted by Tammy Baldwin for a meeting on Arthritis. We were able to share our story and to ask her for help in fighting Arthritis. Our daughter started by telling Tammy that she had Arthritis, that her knees sometimes hurt but that she took shots and pills to make them feel better. She said she didn't like the shots much.

Tammy listened to all that we had to say and was very involved in the conversation. I think that she was shocked when I told her that our daughter is on a chemotherapy drug and we have no idea how or why it works, what the long term side effects are and how long she should really be on it. I could really tell that she was interested in what we had to say and how she could help. She came up with some great next steps that could really help further Arthritis research.

At the end of the meeting our daughter gave Tammy a couple pictures that she had been coloring and we gave her a photo of our daughter holding a Thank You sign like the picture below.

Tammy had just returned from Afghanistan and I thanked her for visiting our troops. I can't thank Tammy enough for her time, it really was a special experience! We look forward to future meetings!

2010 JA Conference Notes - Advocacy

2010-08-09T13:33:00.001-07:00

Advocacy is a huge part of how the AF directs money to research. Congress appropriates millions of dollars each year to disease research and we have to do our part to get our share. However, congress won’t listen to the foundation, we don’t have enough money to pad their election campaigns and the foundation isn’t a constituent. This is where you come in, we need your help to influence your congress person. They will listen to their constituents and if we all let them know this is important our voice will be heard. Sign up to become and e-advocate and get alerts when we need your help!

Advocacy has helped to create a loan repayment plan for docs that become pediatric rheumatologists. However, it’s not funded so we still need to keep the pressure up. Our other goals are to create a registry of kids with JIA to facilitate research. We also need to fund research to discover the answers to questions:
What are the long term affects of the meds we are on?
What is the best treatment plan?
When can we reduce medications?
When should we not treat at all?
Can we find a cure?
What are the best combo’s of drugs?
Should we treat it hard early or slowly?

The advocacy program helped the CARRA database secure short term funding from the NIH, we are working on longer term funding.
CARRA - Database of kids with JIA. It is totally confidential. This database of information is used to facilitate studies of the JIA disease. http://www.carragroup.org/

To become an advocate please go here:
http://www.arthritis.org/inside-advocacy.php

2010 JA Conference Notes - Fundraising Ideas

2010-08-09T13:31:00.003-07:00

Fundraising ideas:
Any business that caters to children: Ask them if they will sponsor a night where the AF gets a % of the profits.
Halloween dance
Brat Stand
Have a night in - Get all kinds of at home parties (tupperware, avon, lia sophia, etc) to come to your home and instead of giving you product, give you a % of the profits.
Hold a silent or live auction
Golf outing
Bake Sale
Invite all your friends to a BBQ and charge admission
Letter campaign - Include a SASE to increase donations
Host a holiday party
Provide a food stand for a community event

Fundraising costs are tax deductible, keep track of mileage to go to fundraisers, mileage to foundation meetings, paper costs, postage costs, etc.

2010 JA Conference Notes - Get involved

2010-08-09T13:31:00.001-07:00

Reason’s to attend camp, family days, networking events and the national JA conference:
Realize that you are not alone
Get great information on how to deal with the future
Be reassured that your doc is doing the right thing
Get a list of questions for your doc
Meet a lot of great parents to help you along this journey
We hear other parent’s concerns and when we encounter the same thing we are better prepared.
Find out about new treatments
Advocacy networking
Reason’s for your child:
Realize they are not alone
They learn about the disease from a kids perspective
They get answers to their questions from their older peers
Meet life long friends to help them through the bad days
Realize that flares are normal
They see older kids going through the transitions and find out what works and what doesn’t. (Daycare to school, middle school to high school, driving, college, etc)

2010 JA Conference Notes - Kids with JIA

2010-08-09T13:29:00.002-07:00

Kids with JIA have sixth sense about when someone is struggling with something. They grow up VERY empathetic and grow to be caring supportive adults.

I have never met a kid with JIA that would go back and change their life and not have it. It makes them so tough, empathetic and caring that they wouldn’t want to be “normal”. To that point a question comes up often about whether people with JIA want to have kids in the future. They are worried that they may pass the disease along to their kids. While no risk has been medically proven it is still a concern. The response that I have heard a few times and makes alot of sense is that we know no one that has JIA that would go back and change it, so if go forbid your child gets JIA they will feel the same. On top of it all you will be prepared to help them fight. If you didn’t have JIA you wouldn’t get to meet all of the neat people at the AF or go to great conferences. You wouldn’t get to have such great fun at the walks and other events. You wouldn’t have met all of your lifelong friends from camp.

2010 JA Conference Notes - Medications and other concerns

2010-08-09T13:29:00.001-07:00

If your child is on an injection give them a choice. They can get it in the morning or at night, they can get it in the arm or in the leg. Have them help draw up the medication, push the plunger, put on the band aide, etc. Get them involved so you aren’t doing it “to” them. Praise them each time for doing a great job. You will need to find a driving factor for them to continue their meds, it can be sports, dance, karate, playing at the park, etc. Whatever your child loves to do and couldn’t without their meds. Keep reminding them that these things are possible with their meds. Guided imagery was talked about as a coping technique for the pain of injections and blood draws.

If your child has trouble swallowing pills, start with mini m&m’s.

Biologic drugs are proteins which attack the chemical markers which cause inflammation. Tumor Necrosis Factor (TNF) is one such chemical, Enbrel targets the key which allows the TNF to cause inflammation. Without the key the TNF is harmless.

Take chest pain very seriously, the membranes in the chest cavity can swell and lead to life threatening pressure on the lungs and other organs. If your child complains of chest pain go to the ER immediately.

Kids with JIA are at a higher risk to dislocate the joint at the top of the spine, where the spine meets the head. For this reason neck pain should be taken very seriously. The head also shouldn’t be tilted back too far. If the child is going to be intubated be sure to let the person know not to tilt the head back too far.

2010 JA Conference Notes - School/Friends

2010-08-09T13:28:00.000-07:00

Transitioning to school can be tough for the parents of kids with JIA. The biggest thing is to be very open and communicative about the disease. Tell everyone your child will interact with about the disease, what it means, what to watch for and above all tell them to treat your child normally as much as possible. No child wants to be singled out. Open communication is the key to a successful school year.

504’s/IEP’s - These can and should be given if your child has a disease where something could happen but hasn’t yet. They are there in case something happens and don’t ever have to be used. They are 100% confidential. Having a 504 or IEP in place before something happens makes your case stronger when something does happen and teachers etc are less likely to think of it as an excuse. These can also set you up for financial aide for college. Things that can be covered in a 504 include: Second set of books at home, longer time for tests, two lockers, closer parking spot, breaks, PE passes, Longer time between classes, Laptop for notes, scribe for notes, etc.

Vocational rehab may be available to help your child get into the workplace. They may help out with school, help with vehicle adaptation, pay for a laptop computer to take notes, etc. Contact your state for more information. Your state may also have other help if you are considered to have a chronic medical diagnosis, including help with co-pays, prescription costs, etc. Each drug company also has a patient assistance program.

The vast majority of teachers are going to want to help you and your child get the most out of the school system. However, they can’t help if you don’t communicate with them often. Be very open with them and they will help in any way they can. Specifically cover signs and triggers for your child’s flares. Another good tool is a “Silent Signal”. Cough twice while making eye contact with the teacher to signal the student needs more time, a break etc. This way others don’t know.

When dealing with friends and classmates it can be a delicate balance. Not everyone needs to know that your child has JIA but it is great when they have a couple close friends that they can confide in. Once again communication is the key. Kids can be down right mean but confronting them with confidence will make them go elsewhere. Finally each speaker with JIA said the same thing, they don’t have people in their lives that don’t support them. They have enough to deal with that they don’t need people that are going to cause them drama. It is very hard for us to teach our children that they don’t need to make everyone happy but it is true. There are a lot of people in this world that aren’t worth our time :)

To get student buy in consider having your child or even better their sibling do a presentation on JIA at their school. Invite the school children to the Arthritis walk and encourage them to fund raise for it.

2010 JA Conference Notes - Doctors tips

2010-08-09T13:26:00.000-07:00

Allow alone time with your child’s doctors. They may talk about things that they are not comfortable talking about with you, it will make your child feel like they have a part of the decisions being made and will prepare them to do the same as an adult.

Take siblings to the doctor’s appointments whenever possible. This will show them that they are not fun time and will help them to understand the affected child’s disease. When your child meets with the doctor see if she minds if her sibling is present. If your child is okay with the sibling can even help with the injections. (Get the band aid, alcohol pad, or even give it).

Keep a notebook - Track the disease in it. Keep track of medications and anything at all that you notice. Write down questions for your doc in it. We often have a question between appointments and then don’t remember to ask the question, if you write it down you will remember. We also try to keep track of small symptoms (limping one day) so that we can track if they are persistent.

Children should know the names of their medications, what causes them to hurt and what to do about it. Younger children can know the basics and older children more specifics. Teenagers should call the pharmacy for their own refills, older teens should schedule their own appointments.

Knowing when your child is in pain can be a very hard thing to master. They have grown up with pain so it is normal to them and they won’t say that they hurt. EACH CHILD IS DIFFERENT but some children complain of buzzing in their joints, thumping, that it’s hot, etc. Some people say that their child’s mood changes. We ask our child if one knee feels different than the other. Also, children will get smart and realize that if they say they are in pain that equals more drugs so they won’t say they are. In this case ask them how they felt yesterday, they probably feel the same today.

KIDS SHOULD BE KIDS. If your child can’t do something, mention it to your Rheumatologist. The goal should be for your child to have normal activity. To that end know your child, let them do something even if you think it will tire them out. It probably will tire them out but you can’t let JIA run their lives. You always have to be aware of it, but don’t let it limit them if possible. On another note, kids shouldn’t be allowed to use JIA as an excuse. Get them off the couch and have them go play. Moving is the best medicine and it will make them feel better.

2010 JA Conference Notes - JIA Diagnosis

2010-08-09T13:23:00.000-07:00

Our daughter’s diagnosis is Juvenile Idiopathic Arthritis (JIA) - Oligo - Extended
Persistent Oligo means the disease stays at 4 or less joints
Extended means the disease progresses to more than 4 joints, after six months

The definition for a JIA Diagnosis is:
Child less than 16 years old
NO OTHER CAUSE
Swelling in one or more joints for six weeks or more

The diagnosis of JIA can be frustrating and take some time. The reason for this is that all other causes have to be ruled out to consider it JIA.

0.5/1 in 1000 kids nationwide have JIA. In Wisconsin it is much more prevalant, more like 1 in 350 kids.

Oligo subtype of JIA is normally easier to treat than the subtypes that come on harder sooner. (More than 4 joints in the first six months). Extended Oligo is normally harder to treat than persistent.

It is extremely rare to develop Systemic JIA if you didn’t present with the disease at diagnosis.

JIA affecting the fingers is a hallmark of a tougher disease. The swelling normally doesn’t get better with first or second line drugs (nsaids)

Rheumatoid Factors (RF) are antibodies made by the immune system. Sometimes they are made for no reason. They can signal an immune system in overdrive. RF proteins survive for an average of 3 months. In order to be RF+ two consecutive positive tests need to be performed at least three months apart.

Antinuclear antibody (ANA) is a marker for iritis and uveitis. 70% of children under the age of 6 have ANA+. If you don’t develop Iritis or Uveitis in 4 years it is highly unlikely that you will in the future.

Anemia - The body is so busy fighting inflammation that it is not doing the maintenance that it should be. (The body isn’t making as many blood cells)

Fever of Unknown origin (FUO) can be a sign of systemic JIA. If a fever persists for more than two weeks, it’s generally not infectious disease related.

When joints are swollen for a period of months the affected leg can grow longer than the leg that is not affected. When this is observed it is a sign that the disease has been there for some time because it is a persistent but slow affect of JIA. If your child walks funny check their leg lengths, we have met a lot of folks that had lifts put in the child’s shoes. If you need a lift in your child’s shoe find a good shoe repair shop. Our’s was able to put lifts in our daughters shoes without you being able to tell that there was one. They did a great job! Normally over time the legs will even out in length if the swelling is taken care of.

When ankles are swollen the affected foot can be smaller than the arthritis free one. Also over time the bones can grow larger and fuse together. Inflammation for a long period of time makes major changes in the affected joints. The bones within the joints grow larger and eventually they grow so large that the joint can no longer pivot.

JA Conference

2010-08-04T18:22:00.000-07:00

We were lucky enough to attend the JA conference out in Philadelphia, PA this year. To say it was amazing, great, etc does not do it justice. This conference brought together over 1,000 attendees, all affected by JA. The purpose of the conference was two-fold (or more). First it brought together parents from all over the nation to meet, network and share information. Second and just as important it brought together kids from all over the nation.

The conference has a wonderful kids program where kids are broken out by age and attend programs that are age specific. Our daughter met many new friends that have JA just like her. Over the years I am sure those friendships will grow and she will come to understand that she is not alone in the fight against JA. I think it is so important for kids to understand that they are not alone in their fight.

The parents program consists of four 1 hour and 15 minute sessions a day on various topics. The day starts with a general session and then there are three breakout sessions where you can choose which topic interests you most. I say most because most of the topics were interesting. In the breakout sessions parents are able to asks questions to the presenter and provide input.

The relationships made are wonderful, no one quite understands what we all go through unless they are going through it themselves.

We learned so much, I can't quite put it into words, you really have to go to understand how great it is.

Stay tuned to future blog posts for more information on this great conference.

Dr. Appointments

2010-07-26T04:16:00.000-07:00

Our Daughter recently had her regular eye and Pediatric Rheumatology appointments.

The eye appointment went great, her vision is fine with no signs of swelling. Good news!!

The Reum appointment went good as well. She can get off of her Naproxen, which she has been on for over three years!! She needs to stay on the same amount of Methotrexate because she still has the slightest of swelling in her right ankle.

We have a followup in three months so hopefully the ankle swelling will be better by then.

As a side note, if your doctor hasn't told you about the various Arthritis groups that are out there ask to speak to them about it or the patient relations person. We never found out about the Arthritis Foundation until 3 years into our daughter's disease! I spoke with our doctor and patient relations and they now have a packet of info for all new patients.

Golf Fore Healthy Joints

2010-07-26T04:11:00.000-07:00

On Monday June 21st, 2010 the Madison chapter of the Arthritis Foundation held a fundraiser at the Maple Bluff Country Club. They had invited some minor celebrities including Mike Eaves, Matt Lepay, Jim Bakken, Pat Richter, and Jay Wilson.

It was a great event for a great cause! Everyone was very enthused about golfing Maple Bluff and helping out the Arthritis Foundation.

I had a chance to talk with Mike Eaves about Our Daughter's Story and he was very interested and asked detailed questions about her situation. He said if he could ever help out again to let him know :)

One note about Arthritis Foundation events, they are fun!! I have volunteered at three of them so far and each time I left feeling like I had spent my time well. Having a young family there is never enough time in the day but I never leave a foundation event feeling like I had wasted my time.

I always have a great time working with such a great group of people. I think it is so very important for them to make the events fun because it encourages you to come back next time, and I will!

The event raised over $22,000 which is great for such a small staff to secure that much funding!

Governor Doyle signs Arthritis Month proclamation

2010-05-27T05:20:00.001-07:00

On May 19th 2010 we were lucky enough to be invited to the signing of the Arthritis month proclamation by Governor Jim Doyle. We were able to tell him a brief story about our daughter's Arthritis and he was very receptive.

He thanked all of us for the advocacy and seemed very genuine in his support for the Arthritis Foundation mission.

It was a neat experience to be in the Governor's office and to meet him.

Spring turning into summer

2010-05-26T04:59:00.001-07:00

Our Daughter's Arthritis has been slowly improving this spring. We have been trying to go to the park whenever it is nice out which means about a mile bike ride for her both ways. On the way home most days she says that her knees hurt, but it goes away quickly when we get home.

I have noticed that when we are inside and not as active for a few days that she seems to be more sore, moving definitely helps her to feel better.

Right now we are staying vigilant and preparing for the summer.

We will be attending the National Juvenile Arthritis Conference in Philly this year, we can't wait.

Stay tuned to this blog during the event, I will try to keep it updated.

Hope you are all having a good summer!!

The "A" Team - Arthritis Walk

2010-05-11T05:02:00.000-07:00

Thank you, THANK YOU, ThAnK yOu!!!! to everyone who donated to the Arthritis Walk this year in honor of our daughter!! Together we raised over $3,000, the second highest total in the state so far :)

Walk day came with miserable weather but we had a good showing and had lots of fun!!

Our daughter walked/ran with her friends and family for the whole walk, didn't need a wagon ride at all.

Thanks everyone, see you again next year!!

Heading to the National JA Conference

2010-05-07T04:24:00.000-07:00

We just booked our flights and the hotel and we will be attending the National JA Conference in Philadelphia, PA!

Information can be found here:
http://www.arthritis.org/2010-ja-conference.php

We are really excited to go and learn more about our daughter's Arthritis, let us know if you are going.

Thank you, THANK YOU, Thank you to the Wisconsin chapter of the Arthritis Foundation for the opportunity to apply for a grant to defer some of the cost!

The Arthritis Foundation really is an amazing place, a place I am PROUD to be a part of!!

Moving, the best medicine

2010-05-05T04:46:00.000-07:00

Moving, something that no one in pain wants to do really is the best medicine for Arthritis and overall health. It is a cruel irony that the easiest way to get through the pain is to move, something she doesn't want to do.

May is National Arthritis Awareness month, one of the main themes is to get out and be active.

My daughter and I are trying to do our best to do just that. When she spends the day playing hard she feels so much better, not just in her Arthritis but about herself as well.

Be sure to take some time out each day and be active, you will feel better!

Spoon Theory - A great way to understand Arthritis

2010-04-28T08:52:00.000-07:00

The Spoon Theory is Christine Miserandino’s story about how she explained her chronic pain condition to a friend.

This is the best description of what it is like living with Arthritis that I have seen. I will never know what it is like, but this does apply well to Arthritis.

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. It will really teach you what it is like..

The Spoon Theory

Daddy's First Shot

2010-04-28T06:02:00.000-07:00

So, wanting to be involved in our daughter's care, I have learned about everything that we give her or ask her to do. I taste each one of her medicines to see how bad it tastes and try to put myself in her shoes. I always show her that I am tasting it so that she knows that I know how bad it tastes :)

My wife was an LPN so when we started MTX shots she was the one who gave them. I told Addie that I would like to learn how so that if mommy wasn't around on shot night she could still get them. I asked her to pick a date on the calendar and she could pick any of 4, so she picked the last one.

Well Monday night was the big night and I was a little nervous but I drew up the shot and gave it to her. She said it hurt a little more than when mommy does it (of course!) but said I could give it to her again.

I think it is important for everyone involved in the care of a child with JRA to learn all about the treatment.

If you have been holding off on learning how to do the shots, DON'T! Participate and feel part of the team.

A new kid

2010-04-26T07:28:00.000-07:00

I have heard this many times over the last month or so. She is like a whole new kid! Our daughter's MTX injections are allowing her to act like a kid again and no one recognizes her. Gone is the shy quiet girl and out has come the overactive outgoing girl :) I am amazed at how much energy she has!

It does make me sad to realize how much pain she must have been in because she hasn't ever been very active. Now she is climbing all over stuff, running around and can keep up with the other kids her age.

This weekend we had soccer for the first time and we pretty much ran for an hour straight. She kept right up with the other kids and didn't complain of her knees hurting afterwards.

Her right knee is still swollen so MTX hasn't put her in remission yet but it has sure helped with her symptoms.

The hardest part about Arthritis is it is so hard to see the effects, we just never knew how much it was effecting her.

It never seems to end

2010-04-22T06:18:00.000-07:00

It seems like every day I have something new that I worry about with our daughter's arthritis. Every time that she says something hurts I ask her 20 questions to decide if it's normal kid rough housing pain or an Arthritis flare.

Last night she almost fell off of her swings and ended up hanging upside down. My second thought (after determining she was okay, just scared) was did she tweak on joints that is going to cause a flare. This morning I checked her over and moved all her joints and all seems well but it's something else to watch.

I'm not complaining, she is doing GREAT on MTX, hopefully her knee will come down and not be affected in the next few months.

It just seems like we can't do much to fight the disease other than to keep an eye out the best we can.

On the other hand we also have an infant son so I do my best to give him as much attention as I do our daughter. I am sure in the future I will have to really watch that to ensure we aren't being unbalanced :)

I thank god for my wife, she's a nurse and her background helps so much! She knows how to do the shots and knows when to be concerned and when not to be. She's the rock :)

Hope everyone is having a great spring!! Bring on summer!

Omega 3's and Inflamation

2010-04-19T14:12:00.000-07:00

It seems every time you turn on the news there is a study that shoes that fish oil can solve your health problems :)

However, there has been some pretty good stories lately about Omega 3's reducing inflammation. For this reason we started our daughter on them, they make some gummies that she really doesn't mind(They don't smell the greatest though).

A link is below to information:
http://www.arthritistoday.org/nutrition-and-weight-loss/healthy-eating/food-and-inflammation/fatty-acids-benefits.php

I'm not sold that it helps her inflammation but I haven't read much that says not to use them so we have her on them for the other benefits with a plus that it may help with inflammation.

Couple things I learned - Head lice and bruising

2010-04-19T14:07:00.000-07:00

Disclaimer: Our daughter hasn't had head lice but is just starting into school so the chances are increasing.

Certain head lice shampoos and products shouldn't be used by those with JRA. Basically those with pesticides in them shouldn't be used by children with Autoimmune diseases. A link to a sad story is here: http://www.headlice.org/jesseproject/index.htm

Bruising
Naproxen can cause children to bruise more easily. Our Rhuem isn't as concerned about the bruises on the front of the shins, but bruising on the arms or other locations should be looked at. We have noticed our daughter bruising more easily but it hasn't been too bad.

Omega 3's can also cause easier bruising.

Pizza Hut Fundraiser - Sauk City

2010-04-16T12:12:00.000-07:00

Pizza Hut in Sauk City is gracious enough to host a fundraiser for us!

Where: Pizza Hut - Sauk City
When: April 28th from 5-8pm
What: Pasta Buffet for only $6
1/2 of the the fee goes directly to the Arthritis Foundation!

Thanks for the support!

Dr. Huttenlocher Appointment

2010-04-14T10:21:00.000-07:00

We had our regular appointment with Dr. Huttenlocher at the children's hospital today. Good news, she is looking much better! The swelling in her ankle is gone and her knee is better. We get to reduce her naproxen to once a day, so she will like that.

Mary Kay stopped by with her basket of goodies and she got to pick out a couple, she loves that :)

She had her blood drawn as usual, results pending :)

The "A" Team is still raising money for the walk, current tally is $2342 with more pledges to be received.

Shirts have been ordered and should be in soon.

Looking forward to the walk on May 8th. See you all there :)

Spring Update

2010-04-06T06:31:00.000-07:00

She is a new girl on Methotrexate! It's not just me that thinks so, others have said that they don't recognize her either. She has so much energy, runs and plays like never before. Preschool has also made her so much more outgoing, just what we wanted.

Most days we take a 20 minute (one way) bike ride to the park after I pick her up from daycare. Last year she could ride her bike about half that distance, now she goes to the park with ease :)

The "A" Team fundraising has been a HUGE sucess so far, we have raised $2020 so far with pledges of over $100 yet to come in. We also have mobiles out at local businesses that are brining in money. REMINDER: The walk is on May 8th at 10am.

Thank you so much to all of our Family, Friends and Neighbors for supporting her. It means the world to us!!

FestiveAle

2010-03-16T06:49:00.000-07:00

FestiveAle 2010 was a huge sucess! Many volunteers showed up and made the event VERY fun! It was my first time volunteering for the Arthritis foundation but it won't be my last. They were very welcoming and made the day enjoyable.

There were many local and regional breweries attending and serving their favorite brews. All seemed to be having a great time.

The next big event for the Madison chapter is the Arthritis Walk. The "A" team has raised over $1,000 so far with a goal of $2,000.

She has been doing well, she seems to be improving more with less comments about her legs hurting. She has been becoming more physically fit since she can tear about more without her legs hurting.

We went on a bike ride/walk last night and her knees hurt after a bit but I think that was more due to not being on a bike for 6 months than the Arthritis. She had a lot of fun and biked as far as we did last year at a good pace.

Thanks for the support!

Dr Struck - Pediatric Opthamologist Appointment

2010-03-03T05:15:00.000-08:00

Went to see Dr Struck yesterday.

All was well with her eyes again. We can start seeing him every 4 months now instead of 3 :) Yea! :)

She has been doing well on Methotrexate, only one time did she cry when she got the shot, must have been a bad spot.

We haven't noticed a lot of improvement in her knee yet, but it can take 12 full weeks for the full affect of Methotrexate to kick in.

Last and most importantly, thank you to all the supporters of The "A" Team. The support has been amazing and cherrished. She gets excited every time I tell her there is a new donation :)

Dr Huttenlocher(juvenile rheumatologist) appt today

2010-02-10T10:37:00.001-08:00

We had our regular appointment with Dr Huttenlocher today. There were prizes galore, she really liked the Badger snap bracelet and the silly putty.

The prognosis was good, her right knee is still affected as well as an ankle is minorly affected. Dr Huttenlocher thought she looked much better but because her knee is still swollen upped her Methotrexate.

Labs were run again, no complaints on the blood draw from her.

We see Dr Huttenlocher again in two months. The main goal for that appointment is for the knee to be doing better so that we can wean her off of the Naproxen and stay on just the Methotrexate.

She has as much energy as ever. She said to me yesterday that she wished the snow would go away so we could go camping :)

Wisconsin Arthritis Foundation JA Family Fun Day

2010-02-03T11:04:00.000-08:00

The Wisconsin chapter of the Arthritis Foundation sponsored a Juvenile Arthritis family fun day on Saturday January 30th at the Blue Harbor resort in Sheboygan, WI.

We attended the meeting with our daughter. Her god parents and grand parents stayed with us in a villa and watched Maxson while we were away.

The meeting was a great experience. We heard stories just like our own time and time again. The treatments were similar to ours as well. It was nice to know we are not alone.

The speakers were 4 young adults who have grown up with Arthritis. They have not had a cake walk, but it was amazing to see the strong people they have become. I hope that she turns out the same.

Then of course there was the water park, daddy took her Friday and Sunday and everyone went over on Saturday.

All weekend she never admitted her legs hurt and we asked her often :)

A great weekend, I highly suggest attending if your child has Arthritis!

Sledding - Jan 18th

2010-01-18T10:28:00.000-08:00

On Jan 18th Daddy had off so we worked in the garage in the morning, she took a nap and then we went sledding for 2.5 hours in the afternoon.

I know that normally going sledding with your daughter wouldn't be a big deal but you have to understand that prior to this day, whenever she was really active she would say her legs hurting because of her Arthritis hurting her. Normally this would happen after 45 minutes or so.

We must have went up and down that hill 100 times (or more). We actually quit because she was sick of sledding.

Imagine that!! A kid that got sick of sledding.

It was a great day, because we both had a LOT of fun TOGETHER and even more so because she wasn't held back one bit by her Arthritis.

Don't get me wrong, she still lets us know that her legs hurt a few times a week, but it's not a daily occurance now.