Back From Boston

Mia had her appointment today with Dr. Lopez. However, before we even got to the appointment, we had some challenges at home...

Mia woke up this morning and was crying. I went down to her room and she was holding onto the side of her bed, crying and saying, "Momma, I can't walk!" So, I immediately put her in a warm bath to alleviate the pain. Afterwards, she still wasn't able to walk. So, we loaded up the car and headed into Boston. I am SO glad we had an appointment today. Otherwise, I think we would have needed to schedule an emergency appointment for her.

When the doctor came in to see her he could tell right away her knee was very swollen. We told him how we had weaned her off the medicine too fast and gave him the update as far as when we started her back on the Naproxen and when the flare started. After examining her, he concluded that:

1. She will need to have her knee drained. They are looking to schedule the appointment for early Monday morning (5/4/09). Since the procedure is painful, and not one that a small child can endure awake, they will have to put her to sleep for it. They will be draining as much fluid as they can from her knee and injecting a steroid into her knee. Dr. Lopez said the steroid should help her anywhere from 3-6 months up to a year. She has never had this procedure done before (NOTE TO ANY JRA MOMS OUT THERE: any feedback would be greatly appreciated!).

2. New medicine. They are switching her from 7.5ml of Naproxen 2x a day to 11.5ml of Ibuprofen 3x a day. Dr. Lopez feels that the Naproxen is no longer working for Mia. She has been on it for the last three weeks and her condition has only gotten worse. So, the Naproxen is no longer helping.

3. Inflammation in one eye (uveitis). Dr. Lopez examined her eyes and said there is a "density" or "thickening" in her right eye. I told him she was just examined on April 17th by Dr. Zuckerman and she reported there was no inflammation in her eye. However, they did not dilate her eyes at this past appointment and Dr. Lopez said they should be doing it every time she goes. Also, her flare occured right after her last appointment. So, either they missed it or it wasn't there until afterwards. So, we are going BACK to see Dr. Zuckerman this Friday (5/1) to have her dilated Mia's eyes and check again. Results from this past visit and the one this Friday will be sent to Dr. Lopez for his review.

4. Leg brace. We can't get her fitted for a brace or have her use a brace until we get the swelling down. Once that goes down, then she can be fitted again to wear a brace on her leg again at night to help keep her leg straight.

5. Scan-o-gram. Mia had another scan-o-gram done today after meeting with Dr. Lopez. She's such a pro now! She went in with her daddy, they said "cheese" during the "picture taking" and when she left the room, she took her Daddy's hand and said, "So ANYWAYS....let's go see my Mum!" Like I said, SUCH A PRO!!

6. Blood work. They did more blood work again today. Unfortunately, we've gone there so many times now that this time Mia knew where we were and what the lady in the other room was going to do to her. She was not thrilled. I will get the results back in the next day or so and find out what her sed rate is, etc.

Phew! I think that is it! So, we are going back to what we kn ow and what worked for her at the very beginning of all this - switching her medicine, very restricted diet and cod liver oil. For now, I am taking her off eggs again to see if that helps. Right now, I am just trying to make her as comfortable as possible for the next few days until she has this procedure done to remove the fluid from her knee.

Do we feel discouraged? Nah. We've already been down that road. There's no point to it! If anything, we feel empowered. We have another battle to fight. We have fought it once before and we'll fight it again. We have seen Mia arthritis-free! We got a good report several months ago that there was "no evidence of arthritis in her body." We are holding onto that good report. We will not remain here, but we will go through it! We are surrounded by the best doctors and therapists and our wonderful family and friends who are always supporting us with prayers and encouraging words (THANK YOU!!!). Most importantly, God is her healer. So, we shall overcome!!