On Sunday night, we were at a prayer meeting. Brylea came limping in from the gym area saying she had tripped but the way she was walking was a little scary. It was definitely a flare up but what was so alarming was that it came out of nowhere. I figured with a little rest she would be okay the next morning.
However, that next morning she was not okay. She was limping severely. She was not complaing of pain but you could tell that walking was going to be difficult. I knew that we had done the Scottish Rite path before and I was hesitant to go back and explain why exactly we had been gone since February of this year. So, like a chastised dog I called Scottish Rite for help. They immediately got us in today. Not only that but we met a new Dr. I was upset seeing a new face but quickly got over it once I got to know her. She was Dr. Wright. She sat down and took the time to really talk to us and assess Brylea. I guess, in a way, we were lucky that Brylea was still limping today so that Dr. Wright could see what we were talking about. She was truly concerned for Brylea. She says that the arthritis Brylea has is very aggressive. She also was sincere in wanting to know what treatment we wanted. She said she would consent if we decided to stay with homeopathy but of course she was biased in the medical field. Nathan and I knew that we needed to make a decision concerning her treatment. We decided to get Brylea back on the Naproxen, Methotrexate (which she upped her dose a tad), and Humira. I was thankful that Nathan was there so that he could ask his questions and for both of us to express our concerns with the medicines.
I am also thankful for the fact that we were able to go to the Juvenile Arthritis Convention so that Nathan could also hear the good & the bad about each of these medicines. However, we both knew time was of the essence and with the cold front coming in Friday we needed Brylea to start her treatment as soon as possible.
I want to scream how this sucks and this isn't fair. Everytime someone wants to offer their two cents on what to take, how to handle it, or what they heard happened to a friend of a friend of a friend I just want to cover my ears, close my eyes, and tune them out. We are learning with this just like everyone else. I wish there was a blanket treatment for everyone. I wish it was that simple. However, its not. What works for Suzie Q might not work for Brylea. I understand that people are trying to help. I truly do. At the same time, I can only take one thing at a time. I can say what has worked (or for now what has not worked) from our individual experience. I just know that I have a little girl in true pain but does not voice it because the pain is all she knows. At some point you have to take a step back and say that if this was your child how far would you move the earth, mountains, and everything in it to make it all go away. That is what Nathan and I are doing. The best way we know how at this point in time.
I am thankful for my wonderful mother-in-law who has yet to skip an appointment to be that playmate for Brylea. I am thankful for my husband who gave up a vacation day of his upcoming camping trip to just be there. I am thankful for the encouraging texts from family and friends. I am also thankful for the "strangers" I meet who say that they are praying for Brylea. A few months ago, at a function of my grandmother's I met Mary and Nancy. One of these precious ladies admitted that everytime she passes her dresser (I believe and hope I am not getting this wrong) she prays for Brylea. My daughter is in the prayers of many! That is one advice that I freely take and give. I serve an awesome God who rubbed dirt in the eyes of a blind man to make him see, with the simple words out of his mouth caused the lame to walk and also calmed a raging storm. I know, I KNOW, God has a plan for my Brylea. He has already blessed her with optimism and a wonderful personality & charm. All we can do is trust Him since He trusted us to take care of Brylea while she is here on this Earth.
Things that I need prayer over is the fact that I am going to need a lot of time off of work due to updated visits, MRI visits, Pulminology visits, and ENT visits. Also, for now insurance does not cover her Humira. I was shocked with the $827 bill at the pharmancy. However, I have called the Specialty Pharmacy section of our insurance and they are working on not only approving it but I pray that the cost is severely LOW!
Other than that, all I can say is thank you and keep praying!!!
