Tuesday, June 2, 2015

End of the school year goes out with a bang!!!!!

Before I post about Bella's health update, I do have to brag a little. For those of you that know Bella, it is very important to her to do well in school. It can be a struggle at times because she misses a ton of school (38 absences to date to be exact). You can imagine how hard it can be to keep up on her classwork and homework. Bella worked hard and we had to do a lot of teaching at home to keep her on track with the rest of her classmates. Bella also had a friend help her out a lot throughout the year and would come help her catch up and study with her (so thank you Miss Kylee). I am proud to announce that Bella will be getting an award tomorrow morning at school because she got Distinguished honors all year in 6th grade!!! I couldn't be more proud of her! She worked hard and kicked butt!!!!! We are excited for the school year to end to enjoy some beach trips, many days pool side, but most of all spending time with friends and family. Bella saw the Orthopedic Surgeon last week and was diagnosed with Osgood-Schlatter Disease in both her knees and was told she had bone fragmentation in both her knees. She is having issues with her knees buckling and constant knee pain. At this point, since she is already on many anti-inflammatory medicines for her JA, they can't give her anything else. She will continue with PT and wear her knee braces. The doctor said they can't consider operating on the bone fragmentation until she has finished growing. It was a tough appointment to hear that there isn't much they can do at this point. The doctor told her she has a tough situation because she has JA and knee issues together. It is hard to watch your child hurt and know that there isn't much that can be done. Were hoping the relaxing summer and pool will help keep her knees from hurting as much. Her gastro doctor wants to schedule another Upper Endoscopy because Bella's Gastroparesis is still painful and causing her some discomfort. So hopefully, we can get that scheduled soon to figure out the next steps in finding her relief! Her rheumatologist has increased her steroid dose again to help the infusion medication last longer. Bella would feel really good for about 3 weeks after the infusion and the doctor felt that it may be wearing off and the steroids would help prolong the infusion within her system. So far, so good. Bella struggles with the idea of gaining weight from the steroids and how angry they make her some days. But the benefits are far better, so we just suck it up and deal with it. You will hear that quote a lot with any family dealing with a chronic illness. Bella will be attending an arthritis camp again this summer, she loved it last year. She is still a little nervous about going, but I reminded her how much fun she ended up having and the new friends she met. It is a great experience for her to meet other children with JA and to learn to cope with her disease. We have lots of fun things planned for our whole family this summer and we can't wait for the school year to end on Friday! I hope you all have a great start to the summer! Thanks for checking in!!!