Our Millie Girl

Our Millie Girl

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!