Our little superstar!

**Logged in to Blogger today and realized I had this whole blog post saved as a draft. I wrote it about a month or so ago and never posted! I'm assuming I didnt post so I could add pics but I'll add the pics soon. Cant believe I did that!!**

As I mentioned in previous posts, Millie was selected to be the youth honoree for the Glitz Glam Give Gala event held by the Arthritis Foundation. February was pretty busy for us as we prepared for the big day.

We did an interview at our home with Danielle Lerner from ABC15. I was so nervous, but Millie was surprisingly comfortable with the lights, camera, and strangers in our home. She sang her pokey song and talked to them about her arthritis. It was a proud mommy moment. As for me, I remember when they left wondering what the heck it was that I  spoke about? It was all a blur! I thought we were doing a "test" type interview and then they were like "okay great job, we got what we need". And just like that it was over. I was so anxious to see how it all turned out, and it ended up being great! I felt like they really took the message of staying positive and staying strong. It was amazing.

The following week we did a live interview on Sonoran Living. Again, Millie did a great job, which was a relief with it being a "live" interview. She kept playing with her microphone which made it seem more "real" haha. That's how 3 year olds are! It was another very special moment for us, Millie spoke briefly on her disease and made us so proud once again!

Then comes the big day! I was a crazy person trying to make sure we were fully ready. My lovely sister in law came and did mine and Millies hair and then made sure to take pics of our family ready to go.

We got there and the red carpet was rolled out (and the almost naked gold men/oscars were out too). The first part was like a meet and greet where we were introduced to lots of people, once again on live tv, and free to wander and snack. Finally, the Oscars and the Gala were starting so they opened the doors and wow the room was beautiful! We were seated at the same table as Millies rheumatologist Dr Ede and his family, along with Danielle Lerner and her fiance. Danielle was the host/emcee of the Gala, and we really enjoyed getting to know and socialize with her and her fiance.

The dinner, the Oscars, and the event were all great! They spoiled our kids rotten and we all enjoyed watching Terry Fator, the ventriloquist. Millie and Reeves never got bored and we were grateful for that! They held an auction of amazing items to help raise more money, and then had two very fun and entertaining fashion shows. So fun!

Then came the time for Millies spotlight. Danielle briefly introduced our family and on screen was Danielles interview with us at our home. Let me point out that the crowd was loud the whole night, but once the interview was played there was dead silence. Then as we walked up, everyone stood out of their seats and clapped and cheered for Millie, and our family. That was a moment I'll never forget. Very touching and emotional. We were reminded instantly that each person there was there because of Millie. They were there to fight for a cure and raise money so Millie (and everyone else who suffers) can live a better and pain free life. At that moment, SHE was exactly why they were there donating and supporting the Arthritis Foundation.

Steffan wonderfully spoke to everyone about what we've been through, what we look forward to and most importantly, our gratitude for the Arthritis Foundation, Dr Ede and the event. Once he was done, the auctioneer came out and walked with Millie to sort of show her off and begin talking to the crowd about donating to the Arthritis Foundation using the auction number they were given. She started at $10,000 and proceeded with $5,000 , $2,500, $1,000, $500, $250 and $100. Left and right people were donating. Pretty much every person in the room held up their number when she was all finished. Then Millie was given the mic and yelled "thank you!" to everyone. She was even twirling, blowing kisses and before walking off stage she curtsied/bowed to the crowd. Who is this kid? Haha everyone loved it! By the end of the night I was getting used to random adults taking selfies with my daughter. Ha! Kind of weird...

The night was definitely a moment in this journey our family needed. We needed to see that we have many cheerleaders and many supporters. We needed to see the work that goes on behind the scenes to really understand and appreciate the work and efforts being made to help Millie. We needed to know we aren't alone in our fight for her. We needed to learn how to get better involved as advocates. We needed to get to know personally our local arthritis foundation team. And Millie needed all of this as well. She needs only good memories when it comes to her battle. At this age she may take memories with her as she grows, and as she looks back at her life with JIA she needs to remember the good things too. Not just doctor and lab visits.

We feel very blessed to have been part of the Gala. It will truly be one of the most memorable moments of my life, and is probably my most proud moments as Millies mommy so far. She is our superstar and we are so very grateful for her!

Time for an update!

Wow! Seems like so much has been happening. I can't believe how fast life just flies by! I swear I blinked and now it's 2015? How?

So there are lots to mention since my last post about what we've been up to. We happily enjoyed Thanksgiving with family and my brother got married to the most perfect girl. Yay! We also celebrated many birthdays last month and had a wonderful Christmas and New Year. Goodbye 2014! I helped out with a church Christmas party, which turned out great, and my mom graduated from ASU! Since the new year, I unfortunately got appendicitis and spent my birthday in the hospital. Then, soon after that the kids both battled croup. So, it's been a ride! I can't forget to mention that we've also been going to committee meetings and attended an event for the Arthritis Foundation (which I'll talk more about).

Throughout all of these events in our lives, Millie had taken a bad turn and started flaring. The week of Thanksgiving I noticed two swollen fingers (one on each hand). I started anti-inflammatory medicine to see if it was just a fluke. But a week later her right knee started swelling, and the fingers stayed swollen and purple. It seriously happened so fast. Once she started to limp I knew she needed to see her Rheumatologist. Her previous appointment with Dr Ede she had no active arthritis, so seeing her go downhill was a huge punch to the gut.

We were able to see Dr Ede on Dec 10th. He did a full check and discovered her right knee, right ankle, right elbow, two fingers and a thumb all flaring. All with her neck still causing problems too. She was in so much pain and it hurt my heart. I was bummed it was worse than I expected too. It was clear we were going to add more medication like we had brought up in the past. We are now giving her a higher dose of the chemo (methotrexate) and we added a medicine called Enbrel, which is a biologic . So she now gets two shots a week at home. It has definitely made a difference and it seems like the flares have almost all disappeared. It's still a waiting game but she is feeling much better then she was.

The goal is to continue on both medications for now. If her body responds well and she continues to have no flares then we will wean her off the chemo and continue with the biologic medicine only. Hopefully things will go "as planned" and we can start weaning her off the chemo during the summer. This disease is such a roller coaster, I'm hoping I can be patient as we wait.

Anyway, as I mentioned in my last post Millie has been selected to be the youth honoree for the Glitz Glam Give Gala event held by the Arthritis Foundation. We've been able to meet many amazing people who are involved with the Arthritis Foundation and with the event. It has made me feel so blessed that these people are working so hard to advocate for MY daughter. They all have been working so hard to raise money and find sponsors for the event, it is going to be such an amazing experience for our family.

On February 16th we are going to be on Sonoran Living live along with the chair of the event, Francis Tesmer. I believe we will be talking about the event and other events held by the Arthritis Foundation (like the zoo walk and the National conference). Hopefully Millie cooperates haha. Then the actual Glitz Glam Give Gala is on Feb 22nd. It is going to come so fast and I'm not even prepared whatsoever. But we are really excited!

I really hope that although Millie is just 3 years old, she'll be able to carry memories of the experience with her forever. I will do anything and involve myself with anything that will help Millie look back at all the positive things and blessings we've been given when it comes to her disease (not just memories of the hard things). My goal as her mother is to teach her to focus on the good in her journey. She doesn't make that task hard, she takes on every challenge with so much courage. She's awesome.

Before I end I want to remind everyone that the Walk to Cure Arthritis is coming up on May 2nd at the Phoenix Zoo. Please join us!!! I would love to be able to raise $500 to support the Arthritis Foundation, however you do not have to donate anything to join us. Come enjoy a free day at the zoo while supporting Millie, or use the money you would pay for zoo admission and donate it in Millies name? Just a thought ;) Here is the website to join Millies team: http://azwalktocurearthritis.kintera.org/millie . If you need help joining our team let me know! Also, it will ask for your donation amount when signing up. You can put $0.00 for now and go back later to add a donation if you plan to. I was so overwhelmed with all the support shown last year, I really appreciate every one of you who came and everyone who continues to support Millie. I have the best family and friends ♡

The past six months...

Wow! I knew it had been a long time since I updated this, but I didn't realize it has been 6 months since my last post! Hopefully I won't forget much as I try to catch up. 

Okay, so we had the most amazing opportunity to attend the JA Conference in Keystone, CO over the Fourth of July. We met so many great families and participated in many helpful classes and activities. It really opened our eyes to the world of families with JA kids. But the best part of it was how much it helped Millie. She LOVED meeting other JA kids! She would smile and say "Guess what mom? She has arthritis too!" about every friend she made. She really felt special and acted "proud" of her disease. It helped me think of how I should act with all the parents that I met. Millie's perspective made me want to talk with the other parents with more gratitude rather than meet them and dwell on the real reason of being there. Millie rubs off on people that way, and I am grateful for the lessons she teaches me. Our trip to Keystone is one I'll never forget. And the Fourth of July firework show on the lake was AWESOME! Best firework show I've ever seen! My kids LOVED it! Millie still asks us when we are going back to Colorado haha not sure if she'd love it as much without the conference part. We all had the best time and hopefully we can attend another JA Conference sooner than later! 

Here are photos from our trip!

  

 

      

 

A week after returning from the conference we noticed Millie's right knee was a little swollen. She wasn't complaining or letting it slow her down so we weren't very sure what Dr Ede would say. Once we saw him he thought it'd be smart to do a joint injection and also drain out the fluid. We were lucky we didn't have to go to downtown Phoenix for it this time, since it was a big enough joint for Dr Ede to do himself. We were able to go to the Phoenix Children's specialty clinic/ surgery center in Mesa near us. It was so nice doing it there! It wasn't busy and because of this Millie had a lot of attention and was spoiled rotten by everyone who saw her. They even let me go into the room until she was asleep to keep her happy. She woke up happy and was again spoiled with popsicles, fishes, juice, stickers, coloring books AND all sorts of "doctor kit" items! The kid gets what she wants. Probably too much really. If she becomes a monster later on in life I'm blaming the Phoenix Children's staff haha.

Before her joint injection. She said I looked weird haha

Millie has been thriving since the joint injection in her right knee. She has been the most active she's ever been and she has been getting so very strong. Her physical therapist was shocked by the sudden strength Millie has shown. She looked at me and said "uh, who is this kid?". It's been such a blessing watching Millie be a kid with no restrictions and nothing stopping her. We are definitely counting our blessings. 

We've recently been worried about Millie's neck, which has been bothering her about 1-4 times a day every day for the past month or so. She will be playing and suddenly cry about her "head" hurting. During this, she'll hold the back of her neck and won't let me touch her. She even tries to hold her breath so she doesn't cry cuz she says crying makes it hurt. It really worried us. After seeing her pediatrician, Dr Ede, a neurologist and getting an MRI we came to a dead end. The MRI was normal (thank goodness), and because she can easily move her neck around a majority of the day, it doesn't seem to be an arthritis issue. Her PT thinks it must be her muscles, and noted her left side is very weak in the shoulder/trap/neck area. So now we are moving forward to try to fix this. 

In our recent visit with Dr Ede last week we were told Millie has no active arthritis!!!! Yay!! Music to my ears! I'm not going to lie I was a little worried he'd say otherwise. Such a relief! Also, while at the visit, Dr Ede told us about a big event that the Arthritis Foundation holds every year called the Glitz Glam Give Gala. It's a big fancy black tie Oscar viewing event held at the Ritz Carlton with a red carpet, fashion show by Rolf's, an auction and an awards ceremony. Also, each year they pick a youth honoree and a medical honoree. For this next years event they picked Millie to be the youth honoree!! We met with the Arthrits Foundation Arizona yesterday and got a better idea of it. We feel so lucky our little Millie was picked to be a huge part of this event. And even more lucky to have the people involved with the Arthritis Foundation a part of our lives now. They are working hard every day to advocate for MY child, and I'll forever be grateful for them. Shout out to Allie, Valerie and Laura at the Arthritis Foundation!

So I think I am now caught up. I'll end this with the greatest video of Millie getting her weekly MTX shot. It shows how brave she is, and also how big her personality is. She is amazing!! I am so lucky to be her mom! Thanks everyone for all you do to support us in this journey and for cheering on our Millie girl! We are always feeling the love and it means so much to us!

An entire year...

A whole year has passed since Millie was diagnosed with JIA. It's funny how in a way the day was exciting for us. We had an answer to what was really going on with our little girl. We were just so relieved. We had a diagnosis and the right treatment plan to get her to walk and feel better again. And we have come so far since then. It's been the most challenging year of my life but I am so grateful to be where we are today.

We have figured out how to manage what she goes through. It's our new normal. And no it's not easy but its okay. We are happy and she is happy. Millies condition could be so much worse and maybe it will be one day. But as far as what we are dealing with these days, she really is lucky.

So since I last updated, Millies right knee still hasn't been good. Also her left ankle began to swell and hurt about a month ago. I was so nervous at her appointment with Dr Ede because I expected him to want to start more medication and thats the last thing I wanted to do. But we caught a lucky break. Since she still uses the correct range of motion on the knee and ankle, he decided to just do joint injections again and see if that does the trick.

I was telling Millie that we had plans to go to Phoenix Children's to do the joint injections. She has the craziest memory ever and totally understood what I was telling her. The last time we did this was in December and she was remembering and saying things like "and they give me crayons?", "Then we go to the cars room?", "Then mommy and daddy can't come?" And so on... Anyway, when Steffan came around she started telling him "Daddy, the doctor is going to put medicine in my knee" and then she said the most heartbreaking thing ever to him. She said "And then guess what Daddy? I can walk normal!" She had the biggest smile on her face. I just looked at her and told her I loved her. I was trying hard not to lose it. I had NO idea she felt different or felt like she walks differently than others. She's only two! She's not supposed to have insecurities or "feel different". Totally surprised me. I'm so scared for her to grow up and for these feelings to worsen or affect her. Scares me to death. Hopefully I'll know how to handle this stuff correctly and ahead of time.

Anyway, so this past Thursday on May 15th we were at Phoenix Children's Hospital for the procedure. All went well. She was happy and ready all morning before the procedure but had a really hard time recovering from the anesthesia. She was very cranky and knocked out almost all day. She usually bounces back nicely from being put under but not this time. Oh well.

On a positive note she feels awesome! Right away she was moving around easily and with no limp. First thing the next morning I went to pick her up out of bed but she stopped me and said "I can do it by myself, my legs dont hurt!" And this was before even trying to walk! I usually have to carry her since walking hurts every morning. 

We are really really hoping and praying the injections work permanently and not temporarily. Theres a 50/50 chance so its very nerve wracking! If it only works temporarily then Dr Ede will have us start new medication. We have three options to choose from for the medication so I have to do some research just in case that's whats next. Two of them are weekly shots, so we'd continue the chemo shot she does now and add another "biologic" shot during the week. And our third option is to do a monthly I.V. at Phoenix Children's (and also still continue the weekly chemo shot at home). I just want the joint injections to work so we can be on the road to weaning her off the chemo medicine. I want her to be in remission!!

Anyway, we recently participated in the Az Walk to Cure Arthritis at the Phx Zoo. We had a huge team! Millie loved all the attention and I was overwhelmed by all the love and support my little girl gets. It was amazing and we raised almost $400 for the Arthritis Foundation.

Also we will be going to the JIA Conference in Denver this Fourth of July. The Arthritis Foundation gives certain families a scholarship to be able to attend and we were one of the families selected. They are paying for about half of the trip. We hear the conference is SO helpful for the parents and for the children. We are really looking forward to it!

Thank you to everyone who is still looking out for our family and keeping Millie in your prayers. The prayers are working! We have the best family and friends! It's unreal!

Millie continues to amaze me every day. She takes on each challenge with a smile. Sometimes its a fake smile with misty eyes, pretending and trying to convince me she is okay. She has made nurses and lab workers cry because she tries so so hard to smile instead of letting them see her cry. Wide eyes and a wide smile with tears, a red face and a little whimper is one of the sweetest but saddest things to watch. She really blows me away with how strong she is and how important it is to her to just be brave through all these hard things. She's just awesome! I am the luckiest mama!

Here is a picture and video of Millie when we were at Phoenix Children's for her joint injections

Here is Millie the day after her joint injections. She was pretty excited to feel so good!

                             Here are a few pictures from the Az Walk to Cure Arthritis 

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