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