I want to start this by saying we have absolutely made the right decision by coming here to Chicago to see Dr. Pachman starting last august. She has done tremendous things for our Zack!
Today we saw all the Dr's that come to our visit here at Children's Memorial. Zack's PT score went up by 2 points which is great. There are still issues with his hamstrings and his neck which have always been an issue for him. She is very please with his skin and she said we will continue to do IVIG until he is a lot better or he has a flare. I have pictures from his appointment but I will have to upload them from home. We are scheduled to come back in March and at that visit we will also see a GI dr. She thinks that there is still something there that is causing him some issues. He still defiantly still has disease activity in his systems but she said it is looking better. She take magnified pictures of his nail folds and that is where you really can see the redness. At his appointment he had 14 vials of blood taken and when we get that back if the numbers are good we will start to decrease his Prednislone. That makes me very happy considering he has been on it for over 3 years and it's not great for his body. Overall this has been the best appointment yet so far in the past 3 years and 8 mo. I hope we can stay on this path.
We go home tomorrow and on Thursday we have an appointment with the ENT to talk about the lump on his neck. At that time we will decide when to do the biopsy and rule out the bad stuff.
Thanks to you all for your continued support. It means the world to me!
2 comments:
So happy to hear more than a little good news!! That's all great! I hope the wishes come true and that he can get off the prednisone. Keep updating us, as you're always in our prayers :) xoxox
Thats is indeed a good visit along with good news.
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