Thursday, August 9, 2012

We Have An Answer

     After a frustrating eight weeks of watching Lucy limp, we have an answer.  The MRI revealed fluid around both knees.  We were thankful it was nothing more severe.  But how does a baby get fluid on her knees? 
     On Friday July, 27th we had another appointment with the pediatric orthopaedic surgeon. I told Edward to stay and work that day, so Grammy joined us for the follow-up.  Guess who was walking normally again at the time of the appointment?  The doctor asked a few more questions and watched Lucy walk again.  She said the tests were all coming back normal, and she just didn't see anything.  She suggested it was perhaps a quirk of a nineteen month old.  All along I knew it wasn't something Lucy was just doing for fun, because I could tell she felt pain.  She said sometimes specialists are only looking for certain things because they look with blinders.  I understood that.  She suggested we visit with a pediatric rheumatologist.  I wanted to scream when she mentioned it often took a while to get into the rheumatology clinic at Cardinal Glennon.  We thanked her and were on our way.  As we were leaving, I mentioned to my mom that I wondered if she thought I was making this up.  She didn't make me feel that way, but I still wondered.
    When we got to the parking lot, I called Edward to tell him of the latest news and then called to make an appointment with the rheumatologist.  It was their lunch break.  Of course!  More waiting!  So Grammy, Lucy, and I enjoyed a lunch at a favorite spot - Chevy's.  Lucy really held her own with the beans!
     As soon as we finished, I called the rheumatology clinic again.  I was delighted to get an appointment the following Monday.  What a blessing!
     On Monday afternoon I sent Edward to work again, and Lucy and I headed back up to Glennon.  I think I know every pothole and bump in the road between here and there!  I just have to say how much I love everyone at Cardinal Glennon.  They are so friendly.  I just love that place.  And the rheumatologist, Dr. Syed, is another person that makes us feel comfortable in the midst of all our health issues.  She examined Lucy and pointed out several things, like swelling above Lucy's knees and her limited range of motion with her right leg and hip.  She tracked down the results of her lab work and told me one of the tests was a little elevated.  Children her age were usually right around a five, but Lucy was a thirteen.
     After asking me a lot of questions, getting a history, and examining Lucy she diagnosed her with another auto immune disease - juvenile rheumatoid arthritis (type 1 diabetes is also an auto immune disease).  She believes she has the mildest form, meaning four or less joints are affected.  She showed me some physical therapy to do with her at home and suggested we keep her pretty active.  She said swimming is a great thing for her.  Lucky for us she is happy to comply with that order.  Dr. Syed also prescribed Naproxen to combat the pain and stiffness in her knee and possibly hip.  We are suppose to have a follow-up appointment in September.  There are two eye diseases that are often associated with JRA, so we also have to meet with a pediatric opthamologist in September.  She will have check-ups twice a year with both the rheumatologist and opthamologist. 
     Poor Lucy also had to give a urine sample (That was fun!) and more blood tests that day.  Bless her little heart.  That really can rip out a momma's heart.  A funny thing happened as we left the little room where her blood was drawn.  I brought her out to a small waiting room as she was trying to quiet down her sobs.  I was comforting her, and her heaves were coming less frequently.  A mom and daughter walked into the room and stood opposite of us.  They were talking to Lucy, and telling her what a pretty girl she was.  Lucy raised her little finger in the air and pointed it at them three times while quietly muttering, "No.  No.  No." as if to say, "Don't even mess with me.  I've had a rough day, and I don't want do talk right now."  All I could do was giggle.
     Lucy has been taking the Naproxen twice daily for a little over a week.  I can't even begin to describe what a difference this medicine has made in such a short period of time!  The first three days after beginning the medicine she limped maybe a total of an hour.  Contrast that with usually limping four to ten ours A DAY.  She hasn't limped in six days.  I do still get a little resistance with her hips when changing her diapers, but I don't know if that is just a habit/she anticipates pain or she actually still has some pain. 
     The biggest change, though, has been her personality.  She is like a new girl!  She is so feisty/funny/busy/vocal/energetic/etc.  It makes us feel sad to know she went for over two months feeling so lousy, but we are so grateful to see her improve and return to her happy, spunky self.  My mom has seen her several times this week and marvels at how different she is acting.
     We are sad to know she, like Ross, has a chronic disease.  However, it could be worse.  We know this is something we can manage.  Again, as with Ross's diagnosis, we are grateful to live in a time that we can treat the illnesses with ever changing technologies.  Modern medicine is a miracle.