Ups and downs...

A lot has happened since I updated last. So I'll start where I left off. 

At her appointment in November we found out that Millie's wrists and finger had the arthritis present. We scheduled joint injections to be done on the three flared joints. So, on December 12th we spent the morning at Phoenix Children's Hospital for the procedure.

 Where the three injections were done

Now that the injections were done it would take time to know whether or not it worked. The holidays came and things were busy but luckily Millie seemed to be doing well. I was very afraid that the cold weather would keep her from feeling good but it never seemed to be an issue. In fact, everyone can blame the unusal warm winter on my prayers. It hasn't been too cold and for Millie's sake, I am thankful for that.

In January, we went from going to physical therapy every week to just every other week. We had to say goodbye to one of her physical therapists, Miss Hilary. Millie occasionally still asks if we are going to see Hilary, so I know she misses her. We've still been working a lot on the strength in her legs, lower abdomen and hips, and we are focusing more on the alignment. She's come a long way since the summer, that's for sure! Also, I've FINALLY been able to get Millie to wear her inserts better and we are hoping this will help with the alignment.

Millie with her physical therapist Hilary

So our next visit to the Rheumatologist was early February. We met with Dr. Ede and left happily. Millie had no arthritis present and he was happy to say the joint injections worked. Whoo hoo!

Her game face at the Rheumatology office

Our excitement was short lived though. Millie complained about her right knee on Valentine's day and when I checked it out I could tell it was swollen. I was told by the rheumatology nurse to start her on Meloxicam (an anti inflammatory medicine similar to naproxin) and to see of that would help. After a week, the swelling didn't seem to be any better so we made the appointment to see Dr Ede.

A few days before the appointment I was able to try out cold laser therapy on her knee (and neck). I was also given something called DMSO gel to rub onto the knee. Both therapies have been sworn by from people who suffer with forms of arthritis. 

Holding the cold laser for her neck (she has always 

complained about her neck hurting but there is no way

to do joint injections or other fixes for the neck)

                                 

Anyway, at the appointment Dr Ede agreed that her right knee is swollen. However, he was surprised that the range of motion of the knee was good. It bent to where it needs to bend and when a joint is inflamed it usually wont bend all the way. He decided that because the range of motion is still good, he didn't want to do a joint injection for it just yet. I was glad he decided this.

Because her right knee is the same knee she had surgery on last April he did want an updated xray. He thinks maybe the trauma could be the cause of the swelling and its not necessarily the arthritis. It kind of makes me worry that if its not the arthritis, then what is it? When she cries she holds the back of the knee like the tendon area. It's weird and different and sad and I just want it to be better.

The cold laser therapy and DMSO gel seem to be helping. She is very active and hasn't slowed down at all, so for now I am sticking to that while keeping an eye on it. We are also keeping an eye on her right wrist. Dr Ede said she resisted a little while he checked it. If her knee seems any worse by the end of the week I will take her in again. 

Thanks to everyone for always asking about her and her health. This darn thing is such a roller coaster but we are managing it. Millie is a special spirit and I wish so bad she didn't have to do these hard things and be so brave and feel this kind of pain. But she does it and she teaches me so much throughout all of the ups and downs. Keep her in your prayers and thoughts. We appreciate it!

My tough little girl

Well, shoot...

It's been six weeks since Millie has been off of Prednisone and on Methotrexate only. I've been nervous with the weather getting colder and with no steroid that she's been hurting. Every now and then she is slower in the mornings and definitely more moody than usual. She complained twice about going into a squatting position and her physical therapist noticed her struggling to step up onto a stair step with her right leg. I haven't noticed any inflammation though.
When we had her Rheumy appt last week I was expecting to hear that she looked good and that it was normal to have joint pain now that the weather has cooled down. I did not expect to hear that her arthritis was back. But that's what happened.
I was so shocked. Dr Ede said that both wrists and her middle finger on her left hand had the arthritis present and they were flaring. He then told us our options. First option being to do nothing and continue the chemo as we have and hope nothing gets worse. Second option is to do the joint injections into the three joints and hope it takes it away and hope no other joints flare. Third option is to add another weekly injection on top of methotrexate (Enbrel or Humira) to help get rid of the arthritis that's present and to help prevent future arthritis.
All of these options are a 50/50 chance. They either work or they don't. We decided to meet in the middle and do option number two. She'll get the joint injections in her wrists and one finger and we will just hope for the best as we have since she's been diagnosed. Her procedure will be Dec. 12th at Phoenix Children's Hospital.
This time around the news has hit me differently. In the past when Dr Ede would check her, I always expected to hear that the arthritis was present. I could see it, notice it, and others could tell too. It was affecting us every day. So it wasn't ever a surprise. Then we went three months of having no arthritis and I began to feel as if her disease was a thing of the past. At least when it came to symptoms of it. So as we sat there and I saw him notice it and saw Millie react, my heart sunk.
I had to leave the appointment early to head for work (as a temp). I had no time to take it all in, or to talk to Steffan about it. I just had to keep moving. And I was angry.  At myself. How did I not know? How long has she been hurting? Was it my fault? There's probably so much I could've done differently to help prevent it. I am so sorry Millie. I wish I could go back and change things.
But I can't. We just need to continue to be strong for our Millie girl. She is always so brave and I know she can handle any trial that comes her way. I am always amazed by her strength and I am so thankful for what she teaches me.
Thanks to everyone who continues to reach out and be there for our family and little Mills. And thanks for the prayers and good vibes ;) It means everything to me. I'll keep posted on the joint injections...

"Millie has stritis"

I found this video from September 18. Millie is in a silly "looking for attention" mood and I ask her about her scar:

https://www.youtube.com/watch?v=fz99bbHbHg4&feature=youtube_gdata_player

More news

It is exciting for me to share that Millie is still arthritis free! I was worried she had a flare starting in her left wrist and a few of her left fingers because of how she was using them but luckily I was wrong :) Dr Ede said she looks excellent and her lab work looks great too! We are thrilled!

It has now been about two months since she has had no major JIA symptoms. Life is pretty normal for us again. Aside from the meds and physical therapy it's exactly how life with a two year old (and a baby) should be.

In fact, last week was the end of having physical therapy twice a week. She's down to just once a week which I am stoked about! And lucky for us she still gets to see both of her therapists, who she loves.

Also, as of four days ago, she is no longer on prednisone!! Hallelujah!!! I haven't noticed much of a difference yet in her moods haha She has still been hyper and hard to get to sleep BUT it's only been for days lol Most importantly she is off of the steroids!! It has been 12 weeks too long but because of the results with Millie feeling as good as she does, it was worth it.

For now we will continue with the chemo weekly. She will see her rheumatologist again at the end of November. In the meantime we just pray that her body will continue to feel good and strong, especially since she is off the daily steroids. We hope her body doesn't start to flare without prednisone in her system. I have a good feeling about it and I am counting my blessings she is a healthy as she is right now.

I appreciate everyone who has continued to reach out to us and to everyone who hasnt stopped worrying about Millie. It really means so much to me that so many people care for my little girl. ♡♡♡

Pictures from the beginning to now

Here are some pictures of Millie and her journey with Juvenile Rheumatoid Arthritis. For some reason, they are posted backwards, so start at the bottom so see them in order starting from April until now. 

Appt where they taught me how to do her shot

All her Chemo "gear"

At a Rheumy appt, such a good sport

Lab work done and showing off her Justin Bieber sticker

In the ball pit at physical therapy kicking her legs

All checked in for her joint injections procedure in her knees and ankles

On our way home from Phoenix Children's Hospital

Same day as her joint injections, she started to walk again!

Her scar from the surgery when they washed out the joint, drained fluid and did a biopsy on her inflamed tissue.

Healing from the surgery

This was my life for two months, huge pregnant with a toddler stuck to my hip. Never wanna do that again! It was rough!

When her left ankle first started to swell

Our second trip to Cardons when we were admitted for four days

In a good mood

Sleeping was so rough

Miserable after surgery

She'd be so happy leaving the hospital room for walks, especially if we visited the train set up downstairs

She was such a trooper with the splint, she barely complained

On our way home from Cardons with her splint on

Millie patiently waiting for some answers and playing with us at our first visit to Cardons

A very scary/yucky moment for me when Millie was sedated for draining fluid from her knee

A few days after her rash was gone, her swollen knee was way worse

  

Pictures from Millie's "hives", when we first noticed the swelling in her right knee

Videos

This was a few days after being in the hospital for her surgery and other tests

This is a couple weeks later and closer to her first visit with the Rheumy

This is after finally seeing the Rheumy. The naproxen definitely helped 

And here is Millie at physical therapy after starting the Chemo (and steroids).

She's like a normal kid again!!!!

The latest and greatest

Okay, so I have yet to post pictures on here and it is in my list of things to do. I have rounded up as many pics as I could find of Millie with signs of JRA. Now it's just a matter of getting them on here. We recently moved, so that has taken time away from my to do list. Anyway...

So today we had Millie's rheumy appt with Dr Ede. First, let me remind you that it was at her last visit a little over a month ago that we were told she had the arthritis present in 13+ joints. Because of this we started two new medications: Prednisone (steroid) and Methotrexate (chemo). Well, good news! She has responded SO well to these meds and today Dr Ede told us she has NO arthritis present! Zero! And her lab work is in the normal range for everything too. Talk about amazing news! And the best news we've had since dealing with her diagnosis these last six months. We really couldn't be happier for little our little Millie girl!

We have definitely noticed how great Millie has felt. She is all over the place with moving and running and jumping and climbing, it's like she's a normal two year old again! So many people who see her regularly have commented on the change in Millie's movement and attitude. She has made such great improvements this last month, even her therapists are ready to put her to more work knowing she's less restricted in her joints and feeling so good :)

So, the tricky question now is: what has caused her arthritis to go away, as far as the medications? She can't be on prednisone forever, it's too harsh for little bodies to be on steroids for a long period of time. But what if the prednisone is what "cured" her joints and not the methotrexate? We have to start weaning her off the prednisone as of today, so now we watch closely to how her body will respond with just the chemo alone. Obviously we are hoping for the best. We hope that since she is in the "zero arthritis" stage, that the methotrexate is all her body will need to avoid flare ups. Definitely keeping our fingers crossed (and our toes)!

For the record though, I have a serious love hate relationship with Prednisone. I seriously LOVE that Mills has felt so good this past month. It has been a huge blessing, and as her mother a huge relief. But I do really hate how "wired" it makes her. She has TONS of energy 24/7. Its like we put red bull in her sippy cup! It is because of this energy that she is not sleeping well at all, which is what I cant stand about prednisone. There was one night where Millie didn't fall askeep until around 11pm, was back up at 2:30am and wide awake until around 7am when she finally fell back asleep for another two hours. It was as if she just napped instead sleeping that night. It was a nightmare. As are most nights. And this mama has a baby I already tend to on and off throughout the night. I just really really can not wait until prednisone is out of the picture and we can all get some much needed sleep around here.

So, as of now we continue with the methotrexate injection once a week, and we slowly wean her off the prednisone for the next five weeks. I hope the easing off of the medication goes well for our little girl. I am so glad she has been feeling so alive and so normal lately. It's the best having our little Millie Ruthe back!  

We also recently moved, as I mentioned earlier. The perfect home for us came our way and we couldn't be happier about it. It is really the perfect fit for our family. We love it!! It is everything we could've asked for, and we definitely feel blessed. I'll say it over and over , it's been a good month!

Well, I will keep everyone posted on how well Millie is doing. I really appreciate all of you who care so much about our little girl. It means so much to me, so thanks! :)