April & July Update

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It seems like the time gets away from me so quickly. I seriously have ZERO idea of where summer has gone! It seems like just yesterday we were at our last appointment in April and here we are in July! I really wish I would keep up with this blog more because I feel like this is my place to vent where other families actually know what I am talking about. With that being said, there is an amazing support group on Facebook called Mothering Juvenile Arthritis. The support there is one of the best I have seen. There are people there from all over America dealing with the same issues we all are. Every topic is discussed and there are so many other understanding individuals there that it is nice to know that we are all a community and that we are in this together.

April

Ok, so here we go. In April, we saw Dr. Johnson at Carrie Tingley and as far as Madison, everything was good. He did blindside us when he told us he was MOVING to Arizona to be closer to family. We kind of knew this was coming because he had told us previously that his wife moved, but he wasn't too sure if he was moving or not. Anyway, he let us know that he would be back one week a month to see his patients. Here is where I started freaking out. When we go to his office regularly, the wait time is about 2-3 hours. I really don't mind because I know how thorough he is with his patients. What I was not ok with was the fact that he would have to see a month's worth of patients in one week! That was a very scary thought to me. As a family, we decided that we would try to come back to ABQ for the appointments and if that wasn't working out for us, we would take the 4 hour trip to Arizona every 3 months to visit him.

When we visited Madison's ophthalmologist, Dr. Leenheer, Madison had some eye inflammation :( Dr. Leenheer was not too sure that it was uveitis just yet, so she told us to give Madison Ground Flax Seed and Omega 3 vitamins daily and she would see her in 4 weeks. This was a scary time for me because I did not want Madison to end up with more medication than she was already on, but thankfully when we went back, the inflammation had cleared. Dr. Leenheer thinks that it may have just been allergies that caused the inflammation. Madison is definitely a fighter!

July

This brings us to July. Since we saw Dr. Leenheer in May for the extra check-up, we won't see her again until next month. And may I just add that I am so grateful for her. She is an amazing eye doctor that genuinely cares about her patients. She is one of Madison's favorites!

I received a call back in June that Madison had an appointment scheduled at Carrie Tingley with Dr. Boone (Ah, I wish I would have got her 1st name!). Of course we took the appointment, but I was apprehensive at first. A new doctor is scary! When we got there, we were called back right away. This was already a great sign! We saw a Nurse Practitioner first and she was amazing. She explained how things were going to work, she got Madison's history and gave her an overall check-up. Madison really adored her so we were happy to know that she would be there all the time! She then went and got Dr. Boone. Dr. Boone is from California and she will also be traveling to NM one week a month to see patients at Carrie Tingley. She was also so wonderful. She was very thorough and also answered every question that we had about Madison. She also said that Madison had NO active arthritis!!! We have been praying and praying for this! We are going to slowly lower Madison's dosage of Methotrexate every two months until she is completely off in hopes of remission in about a year.

Madison is truly a fighter. This has been such a long and stressful journey, but Madison has never given up. I am not even sure that she is fully aware of her situation because she is so young, but I explain to her what it is and why we take her medicine. She seems to understand and is so eager to not take her Methotrexate anymore. We still have a long road to take, but we are going to reach our destination!

Parents, never give up hope. Your little one is fighting a battle and with your love and support, they will conquer and succeed. Stay strong-we are all in this together!

July and October Updates

So happy with our good news!

July Update
We have seen Dr. Johnson and Dr. Leenheer twice since I have last updated. We saw them in July and everything  from her arthritis to her eyes were looking very good.

At Dr. Johnson's, he left Madison's Methotrexate dosage the same, which was good news because he did not have to adjust it to her weight. We were super excited about that because that meant our Princess was keeping strong! Along with seeing Dr. Johnson, Madison has to get blood drawn every time to make sure her medication is not affecting her kidneys or liver. This is always hard on Madison, but she always seems to toughen up and pull through.

When we went to go see Dr. Leenheer, it had been one year since the dilated her eyes, so it was time to do that again. Madison was not a happy camper, but she did amazing. She was able to correctly label all of the images set before her to show she has perfect vision and more importantly that there was no signs of uveitis. For those of you who do not know, uveitis is inflammation of the eyes due to JRA. It is more common in young girls with monoarticular arthritis than any other form of arthritis. Since this is the category Madison falls in, we have to be super careful with her eyes and make sure we get them checked every 3 months along with her rheumatologist appointments. Madison will see Dr. Leenheer again on Thursday, so keep your fingers crossed for good news!

October Update
We saw Dr. Johnson this past Monday and we got some good and bad news. I will start off with the bad news first. When we went in, he said that he was going to up Madison's dose due to the different method we are going to try and that she is getting bigger so she needs something that is equivalent to her weight. On the other hand, Dr. Johnson said that after she reaches a certain weight, he will consider backing off a little bit and see how she does with less and less medication.

Now for the good news! We spoke with Dr. Johnson about Madison's anxiety with her injection every Saturday and he agreed that it was not good for her mental state of mind. He suggested that we try giving Madison her Methotrexate orally. She will not be taking the pills, but instead she will take her injectable medicine orally. We do not know what the side effects will be yet, but we are hoping there are none. Even if there is, we have to weigh the positive and negatives of each method and see which one works best for her to keep her as healthy and happy as possible.

Thank you guys for reading about our journey. It seems like these appointments just come and go and before we know it we are preparing for the next one! With that being said, the Jingle Bell Run/Walk for Arthritis is fast approaching and we would love to have your support. Just click the link above or at the right side of the page and it will take you to our team page so you can make a monetary donation or join our team. We had such a wonderful time last year and we are hoping to make this year as successful as last. We can't do it without you, so please consider joining us, we would LOVE to have you!

Update

Kids Get Arthrits, Too

Wow, it really has been a long time since I have updated you all on Madison. First of all, I would like to extend a huge THANK YOU to everyone who donated or walked with us for the Jingle Bell Walk/Run for Arthritis. We were the 2nd largest team and we were the 3rd team to raise the most money in New Mexico. I am so proud of that and I have you all to thank. The event in Old Town, Albuquerque was one of the most heartwarming experiences I have ever been apart of. We were surrounded by nothing but love and it was the most incredible and amazing feeling. If anything, it has taught me that together, we can raise enough money to find a cure for this horrible disease if we keep advocating.

Madison is doing excellent. I could not be more proud of her. She is just excelling in everything she does and she makes me so happy to be her mom. Madison's Naproxen was making her little tummy so upset. After meeting with Dr. Johnson, he agreed to take Madison off of the Naproxen because he was seeing how horrible it was making her feel. He felt comfortable with taking her off of it because he felt confident that the Methotrexate had completely taken over, so she really didn't need the Naproxen any longer because it is just a non-steriod anti-inflammatory medicine. That was a relief to hear because every single day Madison would be sick. She was constantly just throwing up and never eating because she was too afraid it would hurt her tummy. 

Madison saw Dr. Johnson and her ophthalmologist, Dr. Leenheer, on January 6. Both doctors were so impressed with her progress. Dr. Leenheer is always bragging about how Madison is the best patient she has and that also makes me very proud of my sweet, brave girl. She will see both doctors again on April 10 and I will update as soon as possible. 

I have also added a link to my Facebook, Instagram and Pinterest accounts so that I can be easily reached by parents and families who are also dealing with JRA in their families. I always love to connect with other people who can relate to our experiences. 

As always, I thank you for your love and support. 

Until next time, 

Miranda 

Flu/Cold Season

Isn't she gorgeous?! Not to mention soo strong!

So, it is that time of year again. Flu and cold season has hit our house. I never knew how weak Madison's immune system actually was until now.

Madison started off coughing the day before Halloween. It wasn't too bad of a cough, so I figured it would still be okay to take her out trick or treating. This was the first year she actually knew what was going on, so I was really excited to take her. Bad mistake on my part. Even though I had her bundled up like crazy, Madison's cough got significantly worse the next day. She ended up getting croup, going to the hospital and having to get a breathing treatment. As the days were going by, she seemed to be getting worse and not better. I realized that because of her injection medication, methotrexate, her immune system slows down. It took Madison a good 8 days to get over her cough. I didn't send her to school at all during this time because kids' germs are the worst! It was horrible to see and hear her cough. It was so hoarse and you could tell she was in so much pain. As always though, she pulled through like the tough girl I know and love.

Now, not even two weeks later, she is stuffy and has a runny nose. With the medication she is already on, she is limited as to what she can take to help her get over this cold faster. She absolutely cannot take anything that is penicillin based. The reason being is that Madison's methotrexate is essentially stored in the liver, so when the penicillin enters the liver to be broken down, it has no way of getting out due to a chemical reaction, which in turn, can very easily turn into a overdose. This can have very harsh effects on Madison's health so I even hate to give her anything that is not herbal. It's just a really scary situation, so I try to avoid over the counter medications at all costs. Is there anyone out there than can offer any advice??

Madison's arthritis is so much more than just arthritis. This disease affects our everyday life. Especially now with everyone being sick, we are trying to shield her from possibly coming into contact with any symptoms of any kind of sickness. With that being said, we are in the final weeks of getting together a team for the annual Jingle Bell Walk/Run for Arthritis. This year it is being held in Old Town in Albuquerque, NM on December 13th. We really hope you can make it to walk/run the 5K with us or make a monetary donation to our team, Love for Madison. You can do so  by clicking here. We would love to have you and your support. We have had so many wonderful individuals sign up or donate already and I am truly feeling blessed. Remember, this not only helps Madison, but everyone affected with arthritis. Let's walk to find a cure!!!!!

We're Making Progress!

We're so happy!!

Welcome back to our page! We are so excited to announce that Madison no longer has to see her orthopedist or go to physical therapy anymore! We went to see Madison's orthopedist last Thursday and he told us that Madison has been making significant progress and we know longer have to check up with him every 2 months. We are so excited to eliminate 2 of our 4 doctors!

Madison was seeing Dr. Hoekstra at Carrie Tingley hospital for her little left knee. Since her knee is where her rheumatoid arthritis is, she would baby her knee a lot which caused it to not straighten and she lost a lot of muscle in her thigh. In July, there was talk that Madison would have to wear a cast if her knee didn't straighten by our next check up. In turn, Madison worked super hard in physical therapy every week. I am so proud that she has been so strong throughout this whole process! We also had a great physical therapist here in Grants at Cibola Sports and Physical Therapy.

We also saw Dr. Johnson, our rheumatologist, a couple of weeks ago and he was also pleased with Madison's progress. They did her blood and urine tests, as always, to make sure the methotrexate is not damaging her organs. We haven't received results, but they have always told us that no news is good news so we are grateful for that. We won't see him until January. It's crazy to think by the time we go to see him again, we have been dealing with Madison's condition for 1 year! The time is flying by too quickly, but I am glad to see Madison living such a happy and positive life.

The same day we saw Dr. Johnson, we went to go see Madison's ophthalmologist, Dr. Leenheer at Children's Eye Center of New Mexico. Her and her staff are amazing with Madison. Madison is also such a big girl at these appointments. The very first time we went to see Dr. Leenheer, she stated that Madison was the best 2 year old patient she has ever had! I am blessed that Madison is fearless with any hardship that comes her way. Since Madison is a girl and her arthritis only affects one joint, she is at a high risk level to have any kind of problems with her eyes. Every appointment, we go through the whole process of checking every part of her eye to make sure Madison's eyes are healthy. Every appointment she has had, has turned out to be that Madison is not showing any signs of issues. She never ceases to amazing me!

We would also like to extend a warm welcome for you and your family to join our team, Love for Madison, in the annual Jingle Bell Run/Walk for Arthritis held in Albuquerque, NM on December 13. 2013 in Old Town. If you cannot join our team, we ask that you make a monetary donation of your choice to help fight arthritis in the state of New Mexico. You can click here to donate directly to our team and help us reach our goal. If you have any questions at all, please do not hesitate to contact me. Please help us!

Once again, thank you all for your love and support as we fight this disease!

Treatments

A little sneak peek! :)

We took family pictures last week with Spears' Photography and I had a special request. I wanted Madison to take a picture with a sign that read, "Kids Get Arthritis Too." My goal with this is to spread awareness about JRA. Our photographers, Lloyd and Joleta, have always been so amazing with us and agreed to do this for me without any hesitation. I have gone to them since doing my maternity pictures and every milestone since. I have a very special place for them and their family in my heart. I hope to post the pictures soon!

After Madison's synovial biopsy in May, we learned very quickly that it was going to be a long road. We went for a follow up visit to her rheumatologist, Dr. Johnson, on Madison's 2nd birthday. In order to make her birthday fun, we went to the zoo before. It was so hard taking her there because she still could not walk due to her surgery, but she wanted to go everywhere on her own. Little did I know, that would not be the worst of my problems that day.

At Dr. Johnson's office, we learned that in addition to the Naproxen taken orally twice daily she was already taking, she would also need to take Methotrexate and Folic Acid. Since she was so little, the Methotrexate could not be given to her in pill form. We had the option of a weekly injection or orally. I immediately opted for orally, but after going over the harsh side effects of being given orally, we decided that we would do an injection shot every week to keep Madison as comfortable as possible. I was a mess. I did not know what to think. I blamed myself for the longest time that her JRA was my fault because I didn't get it checked sooner, even though I took her as soon as I saw the symptoms. The surgeon had pointed out that the rice bodies indicated that they had been in her knee for quite some time. How could I not blame myself for not seeing it sooner? Since then, I have looked past that and opted to give the best care for Madison given what we had.

When Madison started on Naproxen, her little stomach could not handle it. She would vomit for any little thing whether it was crying too hard, laughing too hard, running around for too long, anything. It has gotten better since, but she still has to be super careful on how much activity she gets because it will make her sick to her stomach. I brought this up to the doctor and he decided to lower her intake to one time a day. This has helped tremendously as far as stomach problems. I thank God that Madison is such a strong, little girl because she takes her Naproxen and Folic Acid pill daily without complaining. It has already become routine for her.

Her first Methotrexate shot was horrible, they still are and I don't see them getting any better. It is so hard giving them to her because she does not understand what it is for. I have tried talking to her beforehand and telling her we are going to do it, but it seems to upset her even more because of the anticipation. The worst part about her shot is that I have to hold her down. She just screams, "Please don't, please don't" over and over and it makes me cry because I never want to see her in that pain, yet alone be the one to have to do that to her. I just have to remind myself that it is for her benefit. It has helped her tremendously and that fact alone gets me through it. Before Methotrexate, Madison had a very significant limp. She no longer has such a significant one, it is barely noticeable so we are making progress!

But don't get me wrong, Methotrexate is a very scary drug. It is used to treat cancer patients. In the low dose that Madison is getting, it just helps with inflammation and pain management. When they first warned us that she might lose her hair and have some damage to her kidneys and liver, I freaked out. Very, very scary, but she gets blood tests (which also suck) done on a regular basis to prevent any damage.

We also go to Physical Therapy once a week. We also see an orthopedist because Madison baby's her left knee so much that it is unable to straighten by itself. But who wouldn't blame her? She is in pain! PT is to get her strength back in her left leg and build it up so she is dependent on that leg as much as her other one. Madison seems to enjoy PT because the clinic loves her and she gets to play lots of fun games. Her orthopedist is Dr. Hoekstra at Carrie Tingley Hospital. He is very good with her. We see him again this month and he will determine if she needs a cast or not to help with the straightening part. Madison's PT doesn't see any need for a cast, so that is very exciting news!

I cannot say enough about Madison. She is the bravest, strongest, happiest, most lovable little girl. She is so smart and I know that she will fight until she WINS.

Welcome

Photo Credit: Spears' Photography

My name is Miranda and I am starting a blog to tell you about my journey with my 2-year old being diagnosed with Juvenile Rheumatoid Arthritis. I will start off my introducing myself. I am currently a full-time student studying Elementary Education with a concentration in Mathematics. I will graduate with my Bachelor's in May 2014. I had Madison when I was 20 years old and she has been the greatest blessing in my life. She was born on May 13, 2011. Like any mother seeing their daughter for the first time, I was in awe that I created such a perfect little miracle.

Today, she is 2-years old and still perfect. She is unbelievably smart (sometimes too much for her own good, but aren't they all?), strong, determined and gorgeous. When she was 18 months old, she got up one morning and could not walk. I tried to remember if she had fallen or something due to that nature that would do that to her. I looked back on everything and I could not figure out what it was. I would set her down and she would scream because of the pressure. After a couple hours of laying around, she would slowly start walking, but with a huge limp. I was taken back and did not know what to do. This went on for a couple of days and then I decided to take her to our family doctor. I do not know why, but I assumed it was in her hip because every time I picked up her legs to change her, she would scream in pain. We went to the doctor and since Madison had had the flu the week before, he stated that it was probably fluid that settled in her hip and to give it a couple of days. He sent us for X-Rays and blood work, but everything came back normal.

About a week and a half past and Madison still could not walk. I took her back to our family doctor and he referred us to an orthopedic doctor in Albuquerque. We went and he looked at her hip and sent us for more X-Rays and blood work. Again, nothing was determined to be wrong.

It was not until March that my sister, Rachelle, was babysitting her and noticed her knee was swollen to the size of a small apple. Keep in mind, she was not even 2 yet, so it was huge. I bypassed our family doctor and took her straight to our orthopedist in Albuquerque. We went for more blood work and X-rays and he said that it could be a number of things, one of them being Juvenile Rheumatoid Arthritis. I thought that there was no way a 1-year old could have that so I brushed it off. It was not until he referred us to a pediatric rheumatologist that it sunk in that my baby could have this lifelong disease.

Dr. Johnson is the only pediatric rheumatologist in the state of New Mexico so it took about a month and a half for Madison to get in. He took one look at Madison's knee and said he had a very good idea it was JRA. He gave her some pain/anti inflammatory medication, referred us to physical therapy and said Madison would have to have a synovial biopsy of her knee tissue because of the fact that JRA usually affects more than one joint, so they had to do a biopsy to make an accurate diagnosis. Surgery for my 1-year old was not an easy pill to swallow. I thank God everyday for the love and support of my boyfriend, my mom and families. Without them, we would not be able to get through this.

Madison's surgery was scheduled a week before her second birthday. They give you so many instructions to do before surgery, but how in the world do you keep a one-year old from eating and drinking all day until 2:00 pm? It was very hard, but she was the best, as always. The doctor came out about an hour after she went in and told us he found "rice bodies" which was an indication of JRA. I did not know what to think. My baby is going to suffer from this for the rest of her life and she was only going to be 2. My emotions were running crazy.

In my next post, I will go over our treatment plan, medications and updates on Madison, but for now, I just want to get acquainted.

The reason why I started this blog was to gain insight on other parents dealing with JRA. We live in a small town where it basically has been unheard of. I want to learn from other families and share experiences so I can care for my baby in the best way. Tips, advice, remedies, etc..are WELCOMED! Please, let's help each other keep our babies comfortable.