Thursday, November 20, 2014

New knee braces, another infusion, and the end of the 1st marking period in Middle school!

We have had a lot going on this past month. Lots of appointments and we ended our first marking period in middle school. I am proud to say that Bella made Distinguished Honor Roll!! It was tough for Bella since she misses a lot of school but she worked hard and achieved her goal. So we are quite proud of her! Bella's doctor requested that Bella get fitted for custom knee braces to better support her floating knee caps and we finally got those this morning. Bella is not a huge fan of them because it clashes with her outfits and look dumb(her words). But the doctor wants her to wear them on a daily basis when she is walking or during physical activity. So this means everyday (yes I know she is not wearing them today, that's a battle we will deal tonight with Dad) at school since she has to walk from class to class. So, this will have to be another part of life that Bella is going to have to learn to deal with or run the risk of knee damage and we all know what that will lead to for Bella. So her physical therapist and doctor have both pleaded with her and I hope she will listen. She had another round of Orencia Infusion last week and as always the Nurses at Hershey Medical Center were awesome. They take such good care of Bella and always treat her like royalty. We always see a great improvement the week after these infusions and love to see how much better feels. BUT the infusion seems to wear off about 2 weeks later and we have a flare up. So the doctor is thinking about adding steroids back into the mix for the last half of the month to keep her joints from flaring up and causing more damage. We are going to see how long this infusion lasts and if we have the same results as last month the doctor will add in the steroids to keep her little joints happy! She had her appointment with the Ophthalmologist to make sure the arthritis isn't causing inflammation in the eyes. So her eyes looked good and there is no active arthritis in them...YEAH!!! But Bella does need to get glasses...I know it never ends. The office doesn't have eye glasses on hand, so we are going to another office to pick out her new glasses. So hopefully this weekend she will have a new pair. Bella is still doing her weekly injections of Methotrexate chemotherapy (of course she still tries to talk her way out of it). She does still have the same side effects.....the day after they call it MTX hangover because you just feel awful. She gets mouth sores that drive her crazy. But maybe one day we can ditch this MTX and find something that works well without it. FINGERS CROSSED!!! Bella and I got to go to a PSU football game this past weekend. It was our first PSU(or any college game for that matter). Her friend Emilia was the game honoree Saturday and a group of her girlfriends went up to support her. So Bella got to tailgate and watch the PSU game for the first time ever. We also got to see Miss Emilia on the Jumbo Tron....it was such an awesome experience. Bella and I had a blast! Our seats were just a few rows up from the side line, so that was really cool! Bella has been a PSU fan for a couple years now and let me tell you, she loves it even more now!!! She wants to go to college at PSU to be a doctor and I think that dream got even stronger after this past weekend. What a great experience for Bella!!! Thank you to the families that organized the trip and invited us along! For those of you that don't already know, Bella has started her 6th Annual Food Drive. It is already off to a great start and she has collected over 400 pounds of food this year. Her school, physical therapist, friends, and family are all helping Bella collect food for her food drive. To date she has collected over 4,000 pounds of food. She just had an article published in the local paper and an announcement on the radio. I couldn't be more proud of the generous, kind hearted person she is. I can't wait to see what her totals are at the end of the food drive. I hope you all have a wonderful holiday and as always thank you for checking in on Bella.

Monday, November 3, 2014

Her knees are not cooperating

Bella has been having a great run with her new treatment plan but last weekend she started to have problems with pain and swelling in her knees. She was having a hard time walking. We got her on a dose of steroids to help reduce the swelling and she was able to walk normal again by Tuesday. Then this Saturday night it started up again. So after arguing about using her braces and crutches, she went to school this morning with crutches. I'm not sure what is going to drive me more nuts, Bella's pre-teen attitude or her Juvenile Arthritis. They are equally frustrating. Bella is not one that likes attention and the idea of everyone looking at her while wearing her knee braces and crutches was mortifying to her. I had to remind her that not taking proper care of her knees could result in a surgery which would be far worse than using crutches for a day or two. I hate to see her so worried about what others think and to put her health second. In the end we compromised and I allowed Bella to choose the knee braces or the crutches, and she chose the crutches. When we see her therapist today I will have them take a closer look and see if this is her JA or her floating knee caps causing the problem. I want to figure out a plan to keep this from happening over and over again. I have been in contact with her Rheumatologist and they offer us many treatment options but I'm wondering what we need to do next. Bella did get to enjoy trick or treat last week. She did a short walk around with her sisters and had a good time. She also went to her school's Halloween dance and had a blast with her friends. Her next infusion is next week, so I am hoping that helps with some of her pain she has been having lately. Thanks for checking in! Have a great week!