Dr. appointment update 3/17

Zack went to his Stanford Dr today and had a check-up. His blood work wasn't terrible but after his physical and a look over Dr.Lee said things we rent very good. This is the first time she had him leave the room to talk to me. It's very hard for me to believe but she says his muscles are a lot weaker than just the last visit 4 weeks ago. I don't get it and it's SO frustrating. He has been in Karate and is now doing baseball but he's loosing muscle, I just don't understand. His rash is also unstable which means it looks different every time she sees him and is still pretty blotchy. She found some calcinosis on his elbows. Dr. Lee said she is calling Dr. Pachman tomorrow and they are both going to try and figure this out. Dr. Lee is also sending us to a GI doctor to see if there is something else happening and try and figure out why he's not gaining weight or eating. She is going to consult a nutritionist again and she what they think. She is thinking that we are going to start the infusions again, those brought all kinds of issues but we feel like they did help. Because of his muscle weakness she is sending him back to PT. An hour after leaving his regular Dr emailed to follow up and wants to do a full physical on him. I really do love that all his Dr's are connected. Dr. Lee said she will call me by the end of the week and let me know what is going to happen. I feel so deflated, I really was not expecting this when we went to the Dr today. More to come when I hear more. Keep good thoughts for him.