Goodbye, Indomethacin!!

Mia got a good report today! Her joints look great. No inflammation. Dr. Miller was very pleased with how well she looks!

After performing a few dance moves and doing the splits for Dr. Miller, Mia told her how she went to Dance Camp a few weeks ago...for an entire week (8:50 a.m. - 3:00 p.m.). Dr. Miller looked at me completely shocked that Mia was able to go that long and not have any pain. Mia told her, "No, I felt great!"

After examining her joints, she said to me, "She definitely needs to continue dancing...because it's helping. Her joints look great and her posture is outstanding." Staying active and keeping her joints moving is definitely helping!

All this to say, Dr. Miller said we can stop Indocin (Indomethacin). Mia has been taking Indocin every day for the last two years (before that, she was on Naproxen and then Ibuprofen; she has been on NSAIDS since she was 22 months old). She said, "I don't think she needs it anymore." We are SO happy!! Mia is SO happy! There is nothing better than seeing your child so excited when they find out they get to stop taking a medicine they've taken for so long!

Mia will continue to stay on a gluten-, dairy-, soy-, and egg-free diet. She has been off gluten and dairy since she was diagnosed with arthritis. We eliminated eggs a year ago when we found out she has a food sensitivity and allergy to them. We will continue her daily, arthritis-fighting supplements: cod liver oil, Vitamin D3, and pomegranate juice because we believe this regime is helping to keep her joints "happy."

Dr. Miller did notice a "popping" in her jaw, possibly TMJ, but said she was not too concerned about it. She ordered an MRI to be done next month just to check it out. She said it could be 1) arthritis or 2) mechanical (she is growing and developing so things are shifting and changing) or 3) nothing. She said doesn't expect that it is anything, but wants us to inquire the next time we are at a pediatric dentist (we go next Tuesday). Also, she has not had an MRI since 2007....so she is due for one.

All-in-all, it was a great appointment! I love these kind of appointments - the ones where you feel like what you are doing matters. We are heading in the right direction and it is an awesome feeling!

Thank you, God, for directing our paths and perfecting that which concerns us! We are blessed!

Forever Thankful

May is "National Arthritis Awareness Month." We have many friends with children who are fighting this disease. We are still fighting this disease. Every day. And, we fight alongside so many amazing families and their very brave children...many who have become some of our dearest friends.

But, that's not what this post is about.

Today, I am rejoicing! I am beaming! Because this month marks one year that our son, JJ, is arthritis-free! His rheumatologist is amazed...astonished, even. She has seen him several times in the last year and still can not believe how healthy he is now. While our daughter has been the one who has fought this disease longer, the doctor has told us from the very beginning that she always saw JJ as the "sicker of the two kids."

Not anymore!

We went from having a son with fluid on many joints (elbows, left wrist, both hips, both knees and both ankles), to a child who has no pain anywhere. We went from having a son who woke up with morning stiffness and could hardly walk down the hall to go to the bathroom, who was constantly asking us to heat up rice socks to place on his aching joints, who was lethargic, pale and sickly-looking, to a child who wakes up happy, runs, plays, and then goes to bed without begging for hot rice socks and sleeps soundly through the night. We went from giving him daily doses of NSAIDs (Ibuprofen and then Meloxicam) to not having to give him any daily meds at all!

We have also gone from a having a son with severe gastrointestinal issues to one who feels absolutely fine after he eats. When JJ did eat, he would get sick about 20 minutes into the meal. He would either throw-up or his stomach would start to cramp so bad that he would cry and ask to go lay down on the couch with a rice sock on his tummy. He had chronic diarrhea. He had low-grade temps all of the time. We were basically living at Tufts Floating Hospital for Children, "floating" back and forth between the 2nd floor to see the gastro doc and the 4th floor to see the rheumatologist. His rheumatologist was the one who noticed it had been nine months since he'd put on any weight. JJ missed a ton of preschool that year and had to undergo a colonoscopy, endoscopy, upper GI series all within a few weeks of each other. Procedures that no little boy should have to go through.

Not anymore!

JJ no longer has gastrointestinal issues. The chronic diarrhea is gone. No more weird, random fevers. He loves to eat and no longer gets sick when he eats.

Which is probably causing many of you to ask, "So, what does he eat then?"

One year ago this month, we changed his diet and that's when the arthritis and the gastrointestinal issues stopped. JJ is on a gluten-free, dairy-free, wheat-free, egg-free, soy-free diet. He has a list of foods he is sensitive to that we avoid:

He also takes 1tsp of cod liver oil every day, 2 oz. of pomegranate juice (Pom), and 1000iu of Vitamin D3. And, that is it. No other medicines.

Like I said, we are still fighting. Our oldest child, Mia (age 7), is still fighting juvenile arthritis. But, I am not going to talk about the challenges we've had or the tears we've shed because of this horrible disease. Today, I am a thankful, ecstatic, joyful mom! Today, I am thanking God for hearing the prayers of two desperate parents and for putting the right people in our lives at the exact time we needed them. Because one year ago this month our son's life changed for the better. And that, my friends, is something to be forever thankful about.

"I thank you from my heart, and I will never stop singing your praises, my Lord and my God." 
Psalm 30:12

She's Come A Long Way, Baby!

If you only knew.

I remember when she was so very little and my husband would have to have to restrain her with his strong, Italian arms so they could do blood work. And then, we were back there a month later doing it all over again. And, the month after that. And, it never got easier. And, it was stressful for everyone. Every time it was the same thing (you can ask my husband!): I remember sitting in the lab waiting room at Tufts as I heard my two-year-old daughter screaming because she knew what was coming... and we all hated every moment of it.

But, now!!

She's seven and those tearful, fearful days are gone. Granted, she does have a favorite room at Winchester Hospital's Lab Dept. that she prefers to have her labs done in every month - the Children's Room - but, who can blame her? If that is what calms her fears so we can get in and out and be done with monthly labs, then by all means! Let her be picky!

Tonight, when we got to the hospital, that room wasn't available because another child (around the age that Mia started with routine labs) was in there getting his labs done - letting out very familiar screams. Mia was directed by the nurse to a regular room - a very plain, sterile room - and I could tell within two seconds of being in that room this wasn't going to work for her. But, instead of getting upset, she got quiet and then kindly asked the nurse, "May I please wait for my room instead?" The nurse was very understanding and we went back out to the waiting room to wait for "Mia's room" to beome available.

And then, we were called back, once again, and Mia hopped up in "her chair" and did her labs without the nurses or Mommy having to hold her down.

She amazes me!

All this to say...it's the little things that matter on this journey. And, my daughter is overcoming every day - even with the little things!

MTX Day

Mia had to skip her shot last Friday night because she came down with a fever right after school and, as we've been informed by her rheum, "You can't give a shot when a fever is present." So, I paged her rheum and she said to give it to her Sunday or Monday if her fever was gone.

Well, Monday rolled around and she still had a fever - lower than when it began, but a fever was still present. So, I emailed her doc and she said to skip it for this week and resume on Friday (today).

After having a week off, she woke up this morning a little upset knowing what today is - Shot Day. I understand - I am not the one getting the shot, but I am the one giving it. And, it was really nice to have a week off. Despite the fever she had, really nice.

So, I am doing her shot today when she gets out of school because we have something to go to tonight which conflicts with when she would usually get her shot (7pm). And, here's my plan: 1) Convince her to just "get it out of the way" so she can enjoy the weekend. 2) Extra hugs today (we will both need them). 3) Provide chocolate cupcakes (gluten-free, dairy-free, egg-free, soy-free) afterwards because chocolate always helps!

Shot Day is never fun, but I am doing my best to take the "sting" out of things and make it happier for her. So, we are overcoming by changing our outlook - making this better, happier, and yummier during this not-so-fun day. I am proud of my baby...my brave girl!