A record and hope

I feel the need to make a record of what it's been living with Juvenile arthritis this year.
So I don't forget, so I can tell her one day what it was like.

On top of our fridge we have a tray, and on that tray there are several medications. They all have her name on it. Inside the fridge there are more medications. The front of the silverware drawer is filled with various medicine cups and droppers, they are in the dishwasher every day. Medication and vitamins are part of our daily routine - it's become our normal.

Our calender has Dr. appointments on almost every page, multiple ones at times. When her and her sister play imagination there is always a visit to the Dr. involved.

We stay active, the only option for a 2 year old but it's been a big challenge for her to petal a bike or climb the ladders on a playground. Keeping up with other children, even her own age at one time was not possible.

We used to think she was clumsy - smile at our "accident prone" little girl. Before we knew..
Sometimes she would fall over when she was just standing there, or just walking normally.

She was not able to get into her chair by herself, or bend her knees to get out of a chair she was standing on. Even stepping off a stool would produce tears. She began to go down stairs on her bottom.

She could not completely straighten her knees or elbows, and if someone tried to she cried in pain. Changing her diaper was difficult because she did not want to bend her knees.

She walked with a limp for 3 months.

She's seen 8 different doctors, had blood drawn 5 times so far this year, an IV, a catheter, been in the ER, in the OR, and had injections in her elbows, knees, legs, arms.
Mommy has to give her an injection at home once a week, while Daddy gives her a big bear hug.

Her medication makes her more sensitive to germs, she has been sick a lot this year.

And through it all she has been a trooper, never discouraged just more determined.
She has smiled and joked through the pain, she has been creative in how she gets things done,
she has leaned on Mommy and Daddy in her fear, and learned that Jesus is with her. She has wrapped many a nurse around her finger, and has learned not to be afraid of Doctors. She has exercised her lungs during injections and made them strong. She has taught her Mommy and Daddy a lot about courage.
Someday I'll tell her about how brave she was, I'll probably cry. I'll tell her about all the people that prayed for her and loved her in a special way. I'll tell her about how we were so afraid for her until we saw how strong God made her through it all. We will see how God had a plan for all this, we will watch it all come together and we will understand....

We got great news Wednesday at our check - in. B is doing amazingly well, they see so much improvement in her they gave us the okay to begin taking her off one medication. We can begin doing therapy at home to strengthen and straighten her joints. She is running and jumping and climbing so much better. We will watch her closely for flare ups. But we are so Thankful that God is healing her and helping her.


Sunshine said...


Anonymous said...

i am so thankful too... it's nice to hear such good news!


Donna said...

Yahhhh to you all for learning & growing & sharing & giving God the glory!!