Monday, August 1, 2016

Mid-Summer update........

Whooping cough is no joke! I didn't realize what this respiratory disease would do to Bella nor did I expect it to last 100 days.......YES, 100 days!!!!! We are out of the contagious stage but we are only half way through her recovery, 49 days to be exact! Let me tell you, it is kicking butt and taking names! Bella really struggles with it some days. The cough is still severe and causes her to vomit......the cough doesn't care where she is, it hits her anytime (yes, in stores, in the car, at the pool, in the ocean...ha ha). You can imagine the embarrassment this causes a 13 year old girl! Here is the worst part.......THERE IS NOTHING THE DOCTORS CAN DO FOR HER TO MAKE IT GO AWAY, WE HAVE TO RIDE OUT THE 100 DAYS!!!! We have to be very watchful of this disease because it can turn into pneumonia and that is risky for a kid on immune suppressant drugs. Washing hands, hand sanitizer, and avoiding sick people is at the top of the agenda!!! Bella isn't one to often tell you she's not feeling good, she's a tough kid. So when she started expressing that she wasn't feeling right to others, we knew something wasn't right. Bella's usual response when she is asked how she is feeling is "good" (whether she truly feels good or bad). So when the response became, "uh, not great", we knew we needed to get her specialists on board! Great way to spend your summer vacation, huh? She is doing a great job at keeping her spirits high and trying to enjoy as many summer activities as possible. But she has been turning down chances to hang out with friends because she just isn't feeling great, so let your kiddos know it's nothing personal....she just needs extra down time! Bella sleeps alot and a day after a big activity she usually lounges around trying to recoup. Thankfully, her friends are awesome and totally love to lounge around with her! So, as school is approaching we are getting really nervous.........wondering how this will affect her schooling and if it will keep her from playing field hockey (which we FINALLY got approval for her to play sports again with limitations). Keep your fingers crossed that we can slide into 8th grade just like everyone else! This past week Bella had 7 appointments, some planned and others to check in our health concerns. It was a LONG week filled with lots of emotions. She had some testing done and will be going through some tests during the first couple weeks of school too. She has a great team of doctors all trying to figure out how we can get Bella's health back to normal. Unfortunately, the whooping cough has really set her back overall. She had to be taken off some of the medications that she needed to feel healthy. The doctors agree with our concerns of Bella's overall health, there are some things out of whack and we are going to work together to try and get her back to feeling good again. Bella's newest diagnosis, POTS, is making improvement with the medications the doctor prescribed, so that is a plus! Which means her blood is starting to flow properly, but the cardiologist isn't 100% satisfied and has increased her doses a bit to see if we can get it moving even better. He hopes the increase will make things move a little better and have her blood flowing in the right directions! Bella's juvenile arthritis has been rough the past month because she hasn't been able to take all of her medications that keep her JA under control. She's a hurting more than usual and she keeps having rashes pop up. She is also struggling with being in the sun recently. After a visit with her Rheumatologist and her Dermatologist, they have told us her Psoriasis is to blame for the rashes, swelling skin, and burning. So we had to add another cream to the mix to try and get it under control. They are allowing Bella to go back on all of her medications this week too! The doctors are also tossing around the idea of making a big medicine change in the very near future. They believe the Psoriasis and JA would respond better to a drug called Humira. It will be an additional shot every other week, along side her weekly chemotherapy medication. They will stop the monthly infusion of Orencia for this medication. Bella doesn't like the idea and is struggling with the idea of adding another painful shot. Shot day is not fun in our house. It is a battle with Bella, she fights us and argues up to the second the shot is given. Quite frankly, it is heartbreaking as a parent to administer the medication knowing it will immediately make her feel awful(but it eventually makes her JA feel better). This next month Bella will have some testing done as we try to figure out some other medical concerns with her doctors.....keep your fingers crossed that we get more answers and we can get her out on the field playing field hockey and in school without restrictions! As always, Bella is being strong and trying to be a normal 13 year old girl. She continues to make me proud everyday and truly amazes me with her strength. I wish everyday that I could take all of this away from her and make her life normal again. I feel like JA has stolen my daughter's childhood. Sigh!