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