Our Millie Girl

Our Millie Girl

Tuesday, November 26, 2013

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...

Saturday, November 2, 2013

"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:

Monday, October 14, 2013

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. ♡♡♡

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! :)

Friday, August 9, 2013

Playing catch up, Millie's JRA story and where we are now...

First time blogger here so let me warn you: I am not a writer. This blogs purpose is to act as a journal for me and for Millie to read one day. I also will use this to keep family and friends updated on the latest with her JRA. 

Definition of JRA: Juvenile rheumatoid arthritis (JRA), often referred to by doctors today as juvenile idiopathic arthritis (JIA), is a type of arthritis that causes joint inflammation and stiffness for more than six weeks in a child aged 16 or younger. Inflammation causes redness, swelling, warmth, and soreness in the joints. Any joint can be affected, and inflammation may limit the mobility of affected joints.

JRA is an autoimmune disorder, which means that the body mistakenly identifies some of its own cells and tissues as foreign. The immune system, which normally helps to fight off harmful, foreign substances such as bacteria or viruses, begins to attack healthy cells and tissues. The result is inflammation -- marked by redness, heat, pain, and swelling.

(For those reading this who just want to know the latest, you can skip to the last seven paragraphs haha)

Let me talk a little about Millie first, before I begin the story of her disease. My beautiful Millie girl made me a mama on June 2, 2011. She instantly had my heart and I wanted to give her the world. I am not being bias when I say she's the most prettiest and sweetest baby girl ever! Ok, maybe a little bias but its true. Im still always stopped by strangers complimenting her, whether its her awesome blonde curls, or her insanely pretty light blue eyes, and of course there's her cute cheeks, cute smile with her underbite, silly personality, funny faces, you name it! I always say my little girl got everything I ever wanted in looks: the blonde curly hair and the blue eyes. She really is a one of a kind beauty. 

Another reason people love Millie is her personality. She has been able to have full on conversations with you since she was just over a year old. It was kind of freaky having such a little baby ask you questions or put sentences together, but that's Millie, my little chatterbox. It's scary how smart Millie is. Most people don't believe she just turned two with all her talking she does and her knowledge of numbers and counting and colors and shapes, etc. I think it might have been those baby Einstein DVDs haha Jk (but seriously). She loves to entertain too, she'll make any face you want her to make like happy face, sad face, scared face, silly face, and she'll sing or dance for you too. She sure loves attention.
Millie was born  boy crazy as well, and her shy bashful face is hilarious. Her first boyfriend, besides her daddy, was Justin Bieber. She knows all his songs and even today if I ask "who do you love?", she'll respond by saying "Bieber" with a twinkle in her eyes. She also has crushes on the cute boys on Disney Channel. Her fave is Gabe from Good Luck Charlie, and next is a tie between Luke on Jessie and Fletcher on Ant Farm. Her daddy hates it. Haha But at the same time she is so much of a daddy's girl that he lets it slide. He knows he is number one on her list.

Don't be fooled though, our little girl although the sweetest, can also have quite the sour side. She'll tease and be bossy and have a little attitude. My mom has called her the sour patch kid for about a year now, and my sister explains that its because she's a Gemini and has two personalities. I believe it. Sometimes I ask myself "how can the sweetest girl flip a switch and have such sass?" It's true what they say that girls, although sweet, nuturing, and loving they're also born moody, emotional and sassy. And as far as I'm concerned, I get the wrath of her 'Tude being the mom. In fact it's a little unfair the way she treats me compared to how she treats her dad, Steffan. She'll listen to him, cuddle with him and kiss him and... she runs from me. Stinker. But we love her, every day, every minute. She is our perfect baby girl, my little bestie, and the best daughter and big sister there is. We are so very blessed to have Millie. She brings out the best in me, and in all of us.

Ok so now I'll stop bragging and I will move on to the story of Millie and her JRA. On the morning of Tues April 2nd, I went to do a glucose test for my pregnancy. I left Mills with Steffan and when they finally woke up, Steffan noticed she had a weird rash on her cheek and leg. It ended up covering her body and lasted around 48 hours. We just thought it was hives. However, it was a strange looking rash so I'll get back to why I'm even talking about it in the first place.

 So, four days later, Saturday comes and I notice Millie is limping. I mention it to my mom and sit down with Millie to check her out and ask her if she hurt herself. That's when I notice her right knee was super swollen. And I mean like 3x the size of how it should be. It was also hot, like her knee had a fever. It freaked me out so I took her to the urgent care. They told me it could either be viral or bacterial, so they did labs and sent me off saying the labs would be back in a week and to take her to her primary doctor sometime during the week. Well,  Monday morning comes and now Millie refuses to walk. I did not want to wait a week for the labs or just take her to the regular doctor. So I told Steffan we were taking her to Cardons where we could get results from labs quicker. So first thing Tuesday we took her in. They ended up doing labs, an X-ray and then decided to sedate her to drain fluid and do cultures from the fluid. It was a long traumatic day. Before we left they put Millie in a splint to keep her from bending the knee and hopefully help her to at least want to walk. We then got an appt the following week with an orthopedist. Labs, X-ray, and cultures all came back normal and they ruled out anything bacterial. At this point they decided it must be viral. 

It's now a week later and we see the orthopedist. No improvements in the swelling or the use of her knee. He starts to talk a little about how sometimes inflammation can last a couple weeks and he decides maybe we shouldn't use the splint. During our conversation her hives rash comes up (told you I'd talk about the hives later on). We had pictures on our phone that we showed him and got him worried. He had never seen hives look that way before, however her labs came back normal so he knew we weren't dealing with Rocky Mountain fever and other serious viruses that can cause weird rashes and weird issues of certain joints. He then brings up the possibility of this being a Rheumatoid issue. He said the ER Dr checked for that in labs and ruled that out, but still suggested that we see a Pediatric Rheumatologist. Still, we left kind of feeling... empty. No real answers. We had been looking on google and had been scared by the Internet talking about things like JRA and other causes of knee swelling. The last thing we wanted to hear was that we were dealing with something more serious than a virus.

First thing Tuesday the next morning, I get a phone call by Dr Udall (the orthopedist). He explained he had gone over Millie's case with the infectious disease doctor at Cardons because of the rash pictures we showed him. They both decided that Millie needed to be admitted. I was so thrown off. The next four days were then spent at Cardons Children's and let me just say it sucked. Steffan had just started his new job with ASU PD and couldn't be there until nighttime. Here I was, 8 months pregnant, stuck inside for four days with my cranky little babe getting the most horrible sleep on those "beds"! Day one: another X-ray and labs. Day two: an MRI in which she was put under for. Then, day three: knee surgery, also put under for, where they went into the knee joint to fully drain, wash out the joint and get biopsy of inflamed tissue for cultures along with the fluid. And finally day four was just a waiting game of each doctor (pediatrician, orthopedist and infectious disease Dr) giving us the ok to go home. It was exhausting, and traumatizing, and looking back it was somewhat of a waste of time. Each test led to the next, the MRI was to see if there was any bacteria or infection in her leg bones causing her knee to swell, and also to locate where all the fluid was since they weren't collecting much by going in with a needle. They did the surgery to get a more visual look and to finally get the knee to actually drain. They said her knee joint looked perfect and there was no sign of infection or damage anywhere. So basically the only reason for the 2 inch scar on the outside of her knee was for the purpose of draining out the fluid. Again, like at our appointment, all they decided was that it must be JRA unless it began to improve.

So we made an appointment with Dr Ede from Phoenix Children's Rheumatology, who is one of the very few Pediatric Rheumatologists in the State of Arizona. It was another waiting game as they first told me she couldn't be seen for over two months. This was ridiculous, and I was very anxious to figure out what the heck was going on with my kid. So, I called every day for almost 2 weeks in case of a cancelation. I got lucky and scored an appointment for the end of May, which still scared me since it was so close to my due date of June 2nd. Each day waiting was awful. By now I was in my last month of pregnancy, and Millie would still hardly walk. She was in so much pain and cried or whined almost the entire day and night. I hated it and I hated having to medicate her with so much ibuprofen and Tylenol in hopes she'd be happier and comfortable. Her right leg got so stiff from her keeping it from moving that the slightest bend made her scream. We started physical therapy to help excercise the knee and get her to use her legs. She was losing muscle tone in her legs and they both had a "crooked" look from the way she held them all day and night. Then randomly, less than two weeks away from her Rheumo appt, I notice her left ankle was swollen and hot, and she didn't want to use it or have it be touched. Grrrrreat. Just like her knee was a month and a half earlier. This was definitely JRA. Her knee and now her ankle. I had been warned when I made the rheumatology appt that if we were dealing with JRA then we needed to watch for more swelling and to call if anything came up. So I called and they had us switch our appt to just four days away. Yay! All I needed to do was keep baby Reeves in so we could get Millie to the Rheumatologist and get our answers! 

May 17th comes, the big day, and we meet Dr Ede at PCH. After examining her, he confirms and says, "She has JRA, or in this case Juvenile Idiopathic Arthritis: Polyarticular Arthritis". He then tells us that her Arthritis is in both knees, her right ankle, and both joints in her left ankle. Really? Five joints, randomly suffering with arthritis? Why? It was horrible, yet expected news, and  we finally knew what we were dealing with. After more than six weeks, we felt relief. We had our answer. Now, we can move on to taking care of our baby the right way. With a new prescription for Naproxen (an anti inflammatory drug), and lots of information given to us regarding the autoimmune disorder, we were on our way. His plan was to schedule Millie to get joint injections. The injections were going to put medicine directly into the joint and meant she'd be back to walking comfortably! So we scheduled them for June 4th. 

In the meantime, we continued PT and we welcomed our little man Reeves to our family on May 24th. It was exactly a week after her diagnosis. He was just what Mills needed to distract her from her arthritis :) I will never forget how happy she was the moment she met him. It was like they'd known each other forever and she had been waiting to reunite with her best friend. They're eachothers biggest fan, in fact Millie was the first and only person to make Reeves smile for a while. I love it. Anyway, after he was born the next couple of weeks were insane. Insane might be an understatement. I had the adjustment of a new baby, PT for Mills, doctor visits for Reeves, urgent care for Millie with a cough, Millies 2nd birthday, her joint injections procedure at PCH, then an ER trip with Reeves that led into another stay at Cardon Children's hospital (scary circumcision gone wrong)... Ugh, it's seriously all a blur... I just remember I really never wanted to see a hospital or doctors office ever again.

The night of Millie's joint injections she walked all on her own without us having to bribe her or encourage her. The next day she giggled as she marched and walked the halls of the house. One thing was for sure, she felt good to move and she loved it. We had our bright happy Millie girl back! It had been two months since she felt good to move. There was less whining and less "hold you" in my days again. Each day with more walking and use of her legs. She was even sleeping better. I was thrilled and I know she was thrilled too. She had been through so much the last eight weeks and I know she hated what had been going on with her body. She is smart enough to know that she used to be able to walk, run, jump, crawl and climb and now it wasn't the same. It was like an exhausting "exercise" for her to almost have to learn again. But each day was better and things started to get good again. I finally had a routine down with two kids and getting from one appt to another, whether it be her PT or routine labs or who knows what (like I said, it's all kind of a blur).

So now we can finally talk about the latest news with Mills. Sorry it has taken me so long to get to this point. Ok so another thing since Millies joint injections and her walking again is the way she walks. It was worse in the beginning but she was and still is knock knee'd, and her right foot sticks out funny too. She doesn't like to extend her feet like pointing them up and down or sideways. We have been working on this at her PT appts twice a week and its improved a little. She doesnt have too much of a crippled look like she did in the beginning. It frustrates me because these things were not an issue before the arthritis. The orthopedist seems to not be worried and says she'll grow out of it. I hope so. She does have orthotic inserts for her shoes to help her shift her weight on her feet differently. Hopefully this will bring her knees apart more. 

Anyway, also at the beginning of July I notice her "birdy" finger on her left hand was swollen. Awesome. Not. We watched it and over time she stopped wanting to use the finger. Also over time the whining and the "hold you" came back. Uh oh, Millie was hurting again. Now we were back to the bad days and bad nights. Things slowly went downhill. PT became an absolute nightmare. And a fun little trip up north also proved to be too hard on her body with the rainy weather. Giving Millie the attention she needed was rough with a newborn who also needed my attention too. It was frustrating, sad, and heartbreaking for all of us. 

We finally had our routine Rheumatology appt and we knew we were in for some bad news. In a way there was good and bad news at the appt. The good news was her blood work came back showing her inflammation markers were improving. Most likely because of the Naproxen. And then the bad news came once he examined all of her joints. He explained to us that her arthritis had spread and had become worse. It was still in her knees and ankles, meaning the joint injections had failed. Aside from knees and ankles it was also in her hips, wrists and a few fingers. Possibly a few toes too, although it was hard to tell. More than thirteen joints. We had known she hadn't been herself lately, yet we werent exactly prepared for him to tell us it was this bad. We also weren't prepared for the new plan of how to treat it.

The new medicines he prescribed for Millie are Methotrexate and Prednisone. Dr Ede went over what these medicines are and how they work. She will be on Prednisone for only six weeks until the Methotrexate "kicks in" in her body. Prednisone is a steroid so she's definitely had more energy, moods swings and more of an appetite, which are common. The Methotrexate is a chemo drug. Yep, scary! I never in a million years imagined my little girl would need "chemo". It's a small dosage so luckily she won't lose all her hair, her hair is what makes Millie... Millie! Haha Anyway, a nurse taught me how to give Millie the injection for me to do it at home. The nurse actually made me practice on her first! Millie has now had three of the injections. She gets it once a week. It makes her really tired and weak the next day. I am very hopeful that this gets her into remission with the disease. I have heard of kids being on Methotrexate for years. I really don't want it to be that way for Millie. Dr Ede said that once she seems to be in remission for six months then he will wean her off. I am hoping and praying it is sooner than later.

In the last three weeks since we started these new meds, Millie has been a whole new person. She is moving a ton, and non stop! She feels ALIVE! It is pretty amusing watching her play and seeing the difference in her mood. We have been told that the Prednisone (the steroid) makes you feel like a million bucks haha and we can tell that she definitely feels that way lately. Even her Therapists are shocked at the difference. She now cooperates and has fun at her therapy! It's been such a nice change, seeing her just so HAPPY :)

Millie is tough. She is an example to me of strength and bravery. She tries so hard at every doctors visit or PT appt to be a big girl. She hates it but she cooperates and handles everything so well. I am so proud to be her mama. I have been blessed with the most amazing little girl. I am so lucky my Heavenly Father trusted me to be her mama. He knew that me and her daddy would be able to handle this and take care of her the way she needs to be taken care of. I also believe that Millie knew before she came into this world, that this was in the plan for her and she said "bring it on" :) There is something special about miss Millie and just wait, she is going to do big things in this world.

To family and friends reading this I want to say thank you for everything. We are so grateful that so many people care about Millie and her health. Thank you for your prayers and for offering help and support towards us. It means more than you know! I dont quite know how often updates will come but I will do my best to keep everyone posted as things progress and change. Thank you again for being so wonderful!