Our Millie Girl

Our Millie Girl

Wednesday, November 5, 2014

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!