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