Today's appointments!

Olivia had a couple of great appointments today. She first went to PT with Paddy and had a great time! After that we went to see Dr. Birmingham and he is once again lowering her prednisone dose, it is now 1/2 what is was when she started. Hooray! He continues to say how pleased he is with her improvement. We were originally supposed to go to the wound clinic today as well, however with Danny getting sick and having to go to emergency via ambulance, we cancelled with Dr. Hodgson. Dr. Birmingham thought that was just as well because he would prefer we leave her elbows alone until she is off all medications, which could be years. He thinks at some point she may need a skin graft for them. He did say her labs are all almost normal, which is fantastic. However, he doesn't want her to go back to gym class this year due to her injury risk. He gave us the run-down on how we are going to proceed if things continue to improve, we'll first try to get her completely off prednisone, then we will work on getting the methotrexate from a shot to a pill, then completely off the methotrexate, then off the plaquenil. He said she may have to continue on the plaquenil for many years, it just depends. He also said there is some probability that at some point these medications could lose their effectiveness and we will have to resort to other medications. So far there is no end-date for the IVIG, he said we will just have to wait and see... I have to continue to say how well she is doing, Dr. B. mentioned again today that she has the kind of JDM that worries him most. I cannot thank God enough for putting this amazing doctor in our life. I wish I could share him with everyone who is having these struggles with myositis.

Next step this week is to get Olivia a pnuemonia vaccine. At least I don't have to give her that one, I am getting so tired of having to poke her every week, she hates it so much, even with her numbing cream. She did have a while where she was really tough about it, but that phase seems to have come to an end. :(

Every day I am so grateful for all God has done for us and for the people we have met. Meeting Anya and her mom was also an amazing eye-opener on how God works. Anya was in a Russian orphanage and was adopted at age 2, I think her JDM started at 6(?), and I cannot even imagine what would've happened had she still been in the orphanage. But God had a perfect plan for her with Barb. :) What a miracle-in-the-works all that time through that little girl's very young life, and nobody even knew what God had planned for her! All he has also done for us, with the friends he's connected us with, the whole thing is so complicated. He's given me someone (a whole family) to pray with zeal for, and another mom just to chat with, and friends that I can relate to so easily. And for Olivia, just to make friends that all feel like she does removes such a burden. I love to see it all unfold. Thank you to all of you who have prayed for us and continue to pray, it means everything to us. Goodnight!