Our Millie Girl

Our Millie Girl

Tuesday, May 5, 2015

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!

Friday, January 23, 2015

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 ♡