Our Millie Girl

Our Millie Girl

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 ♡