Monday, March 31, 2014

Bella's post..

I love my physical therapy so far!!!! I love my physical therapists because they are friendly, caring, and funny. I have to go to physical therapy two days a week. When I go I get heat on my back, I use the stepper, the wall, clams, and other exercises. They are amazing therapists because they help me and make sure I am feeling good!!!! But as you know I do not feel good every day😊! Like today my leg hurts!!!!😞
Today I go get blood work to find out if my new chicken pox vaccination stayed in my body. They need to know so I can start my new medicine called Enbrel. Enbrel is another injection that will help my JA.
Some days I feel, okay but most  days I am sooooo tired and cranky. Lately I have been hurting ALOT more. I think I hurt more because of the weather and because my doctor is slowly taking me off steroids.
My legs still have the most pain in my body.


Tuesday, March 4, 2014

When the doctor calls you know something is up....

We have been preparing for Bella to start her new injection (Enbrel). For anyone that has prepared for this, it involves a bunch of tests. Which we did all of them and we were waiting for the call to tell us that Bella was ready to go and start her new medicine. You know, that medicine we raved about because it has the power to take away the pain and inflammation?
Well, as I saw the number from Hershey Rheumatologist come through I was a bit excited. Then I heard the voice of the doctor come through (normally the nurse calls for good news/prescription instructions), which stopped me in my tracks. The news isn't the end of the world but it sure did put a knot in my stomach all night. And make me research the internet for hours.
We found out that some of her blood work came back off track and that for some reason her one vaccination is no longer present (even thought she received it), which is not good.
Anyone that has had their child on chemo or immune suppressant drugs will understand what risk this puts on Bella. It is scary. I would like to order a bubble for Bella, does anyone have one I can borrow?
So the doctor is acting fast and requesting new vaccinations ASAP. So hopefully we can get in within the next day or two. The doctor said she has seen it happen before with other kids with JA, it is still odd but were not the only ones.
So this means that we can't start her new medicine for another month...SIGH....
In 3 weeks from the vaccination they will blood test Bella again to see if her body accepted the vaccination. If not, we have to discuss our options with the doctor...........ugh
Now we have to be even more cautious than we were before and hope and pray that no one is carrying any of these diseases that can cause Bella more problems. Can someone deliver that bubble for Bella??? he he
If that isn't enough to make a parent worry, I don't know what will.......
Keep your fingers crossed.
So today we took pictures of Bella for transformation Tuesday (all the cool kids are doing it on Instagram/FB he he) and we realized that Bella's face has changed so much in 2 months. Bella is quite upset about it. I still think she is beautiful but it makes her sad. The picture below: left is today and right is January.
But Bella did have a great time this weekend welcoming her friend Emilia home from her last chemo treatment.....there was a parade in our town to welcome her home! We were so excited to celebrate this victory with Emilia and her family. Bella rode in the car with Emilia home and it brought a huge smile to her face.