Was it because she went off the medicine too fast?
Was it the rainy weather?
A million questions fill my head, along with a million reasons why I HATE JRA.
With that said, it is official...I have returned to this blog. As most of my readers know, this is my personal online journal. I write to keep track of what is going on with Mia and how JRA is affecting her body. I write to keep myself encouraged. And, I write to inform others to ask them to pray for our little girl.
While I enjoy writing, I must admit...I was thrilled to be able to take a break from this blog. Mia had been doing soooo well for soooo long. And, now this...her second flare:
also, bony overgrowth of cartilage
on the inside of her knee from the arthritis)
The first flare happened back in November of 2007. We worked HARD to get the inflammation down in her body. Just thinking about all the tests, medicines, MRI, therapy sessions, ultrasounds, leg braces, elbow wraps overwhelms for me...so I won't go there. We know what we have ahead of us. Most importantly, we know what to do to get the inflammation down in her joints.
For those of you who have no idea what juvenile rheumatoid arthritis is it is an autoimmune disease, meaning that white blood cells lose the ability to tell the difference between the body's own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.
At her initial diagnosis when she was 22 months old, her right elbow, left knee, right ankle and several toes were inflamed and swollen. She had a hard time straightening her leg and would drag it when she walked. She could not straighten her right arm all the way either. But, once we put her on a gluten-free, dairy-free, eggless diet and started giving her a teaspoon of Carlson's Norwegian Cod Liver Oil once a day we saw immediate results. It took a little more than a year and then we we finally received the good news from her doctor - "no evidence of arthritis in her body." (I am holding onto that good report because I believe she will get there again!)
Fast forward to today.
In the last week or so, we noticed some swelling again in her knee. So, when I dropped her off for school today I informed her teachers so they would be aware of any discomfort she may be experiencing. I specifically told them if she was going to have any problems it would be after nap time. With JRA, when a child has a TON of activity and no period of rest (like a full morning at school) and then lays down to take a nap (on the floor) after several hours of activity, the joint(s) affected tend to swell up, creating a very painful situation when the child wakes up.
And that is what happened today.
I got the call at 3:00 p.m., right after nap time, that I should come get Mia because she was in crying and saying her knee hurt. When I came to get her she was limping. So, I took her home immediately and put her in a warm bath to try to ease any pain/discomfort she was having. The rest of the evening was filled with tears.
Luckily, Mia has an appointment tomorrow morning with Mary, her physical therapist. We haven't visited with Mary since November 2008, so it will be very nice to see her. Mia LOVES Mary!! We are very blessed to have found such an awesome physical therapist. Mary is the best!
We have an appointment scheduled for May 7, 2009 to meet with Dr. Lopez, Mia's rheumatologist. She has been going to Dr. Lopez since she was 22 months old. Our goal at PT this week and next is to get the swelling down before her appointment with Dr. Lopez.
So, we are back to a very restricted diet for Mia - no gluten, no dairy, no sugar. Wow...every toddler's dream diet!! Poor girl! I am even considering taking her off of eggs again if the swelling does not go down soon. Mia LOVES eggs, so we shall see.
Please keep Mia in your prayers. We will continue to stand on the scriptures I posted in the beginning of this journey and believe for a complete healing for our daughter.
"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)
i'm praying for you guys!
ReplyDeleteWe are praying for MIA!!!
ReplyDeleteLittle sweetie! I am so sorry about her pain and discomfort! That diet is a tough one, but SOOOOOOO good for inflammation of any kind! Praying for you, Dana, and Dad, as you hunker down with the protocol again. Praying for healing and wholeness for your sweet Mia! You can tell her that Ade takes fish oil every day, and Em, and we keep a tight reign on the grains, dairy and sugar here, too. It's the exact protocol for a Lyme's patient, so I understand how hard it can be. Standing with you! xoxox
ReplyDelete