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!

Sunday, May 18, 2014

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 

Tuesday, March 4, 2014

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