Every time my phone rings I rush to see if it is the doctor calling...........not yet.
No matter what the results are we will be pursuing the next step in her treatment. We need to take another step because the MTX injections are not working. They are good for slowing down the progression of the disease but do not stop the pain and inflammation. Of course the MTX comes with it's own list of side effects that vary in severity each week. The fatigue is Bella's biggest complaint from the MTX. She also has slight nauseous and the taste of food changes. She has a bit of hair thinning, but I told her that no one but her and I would ever notice. I have never seen my daughter sleep as much as she does, she is the first to bed and the last one out of bed. Given the chance, she sleeps in between or chills out on her bed reading or playing on her Ipod. It's weird to see her lounging so much because she was so active and usually following me around trying to listen to every phone conversation or offering to help make dinner ( I lost my little shadow).
Her last round of blood work showed that her WBC is low, so we have to be careful not to expose her (unknowingly) to people with contagious diseases. So, if you come to visit we will ask you to use hand sanitizer. If you are sick, please don't come visit. If Bella gets sick we will have to stop her treatments and it means that her JA symptoms will be worse. I know it is hard to keep kids from getting sick, but we sure can do our best to try. There are a few contagious diseases that will be really bad for Bella to get, like chicken pox or shingles (just to name a few). Two of her other counts came back high as well. At her next appointment we will discuss what steps to take next to get these counts under control. She did loose 3 pounds in one week, so they will keep an eye on that as well....but I'm sure the holiday snacks helped that...he he
Lately her biggest pain complaint has been her knee and ankles. Her newest joint pain is in her wrists, it keeps swelling and turning bright red. She has been limping a lot more and dragging her one leg, which we have noticed on and off for about 3 years, but recently we see it happening more often.
We did have a wonderful Christmas. We got to visit our family in Delaware where Bella grew foundly attached to the newest addition to our family, SJ. Bella snuggled that baby and took care of him every moment she could, it was adorable!!!!! She got to hang out with all of our cousins and my Aunt & Uncle. It was so nice! We got to spend time with friends when we came home and of course got spoiled by Grammy & Pappy on Christmas day!
She got her normal round of MTX injection last night and now she is feeling exhausted today. We will be having another Christmas celebration tonight and we leave for NY tomorrow to visit Grandma & Grandpa. Daddy bought all of us tickets to see the Christmas Spectacular(Rockettes) in NYC on Sunday. Let me tell you, we can not wait!!! Hoping Bella is feeling good that day and is able to twirl around the city a bit with us. If not, we'll be doing a lot of piggy back riding with Bella.
Hope you all had a wonderful holiday just as we did in the Anderson house. As we bring in the new year, we are hoping for a cure for JA or at least some relief for Bella's symptoms!!! But most of all, I hoping my phone rings soon with the results to Bella's tests...he he
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