November

It has been a few months since the last post. Ava has had so much going on. I finally had enough with the Dr that replaced Dr.Lopez. I hate to say this but a MOTHER knows best when it comes to our children even a Father. I am now happy that I made the tough decision to leave Tufts Floating Hosptial for Children. If it wasn't for Dr.Lopez and his team who knows where Ava would be. It was sad to see him leave, we have since moved on to Children's Hospital Boston and are now being followed by Dr.Sandel I first did my research on him. He is like the god father of JRA, he was so amazing and what an amazing connection he got with Ava. Usually she is not having it and he got to her level and reached out to her. Ava has been on Maloxicam every day for over a year. In sept he said to stop it and to see what her body would do, because it "HIDES" alot of symptoms. So we did a few days later Ava had all her GI problems back again like she was as a baby. On top of that her mouth had these white headed pimples in her mouth. I am not a doctor but I knew she should be Folic Acid with the Methotrexate but she was taken off of it for some reason and now that Ava had to go threw that terrible ordeal with her mouth having booboos. She is now back on the Folic Acid. The Maloxicam did take care of alot of her GI issues but now off she is on liquid Zantac twice a day to help and on stool softeners as well. Miralax every other day to help her out and to give her more control instead of pass large stools. I still don't know some days what to make of it but it is what it is. I believe because Ava went untreated for 2 years and not a doctor knowing what she had made a huge impacted on her life today. I am lucky I am a strong mother but I still can not figure out why me and why my daughter, I know every parent out there who has a chronically ill child says the same thing.