Our Millie Girl

Our Millie Girl

Monday, September 23, 2013

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


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!!!!

Thursday, September 5, 2013

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! :)