Izzy is not lasting for 6 weeks in between infusions so our Rheumy has put her back down to every 4 weeks. We are going to stay on this for a little while longer. Next, will be Humira. I was informed that that one is VERY painful for her so I am holding out for that one. Her Methotrexate also got increased today. She was not very informative to the Dr. today. She just hasn't been herself lately. I am hoping her labs come out ok. They take blood beofre every infusion to make sure there is no abnormailities. The Doctor discussed the results from the last MRI and told me that there was little inflamation in the jaw but wants to hold out a little longer before the next injection to that joint. The SI joint will get and injection this week and hopefully ward inflamation there for a while. Her hips and look good so the limping is from the SI joint.
Devon-now he stressed me out today! He doesn't do well with dr.s to begin with now you add all this and he gets scared! I am too! Dr. saw that the naproxen has brought down the fluid in his knee. Yeah! They are starting him on Physical Therapy for some strengthining in his back. We are doing a week of steroids, then Methotrexate in the liquid form, and naproxen. We are also doing a work up with Allergy and Immunology to see why he is always sick. Waiting for the Diagnosis for a while to see what all these tests come back as and in June he has a MRI's done. His weight is inthe 3% for his age and we need to see why he is not gaining. He eats like crazy!
Devon was so upset about his blood draw. He kept telling me to tel them no. I told him it was my job as a mom to take care of him and he asked why I want to hurt him. I know he is only 6 and doesn't understand all this. If only he knew how I hurt to see both of them go through all this and to know that I wish they didn't have to do this!
At least I am good with him for a few months at the Rheumy. Now, Immunology should be REAL FUN with him! These kids are going through so much! They are just amazing to me! I love them so much!
All About Us!
- Larry, Samantha, Devon and Isabella
- Adventureous! We are a family that is not only fighting for our childrens health but for a cure! JIA not only affects Devon and Isabella but also our family. It is a journey that we are all choosing to be on together. We alone can not make a better world for her but with the help of family and friends and our GOD, helping them live will help others too. Knowing more about JIA will make us all a little less scared and whole lot closer as a family! Cuz' baby, that is what IT IS ALL about!
1 comment:
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