Friday, May 03, 2013

Make a Difference: Vote for Brayden!


Juvenile arthritis friends! We need your help!!

Brayden Christmas, age 6, was born with a rare genetic disorder called L-1 Syndrome and has endured 13 surgeries in his life. Brayden is the only child from New Hampshire in the National Mobility Awareness Month contest online. With your help, he could be chosen as the winner of a wheelchair-accessible van. His parents, some of our dearest friends and youth pastors at our church, said it would be a blessing for him as he goes to school and makes friends.




Please vote for Brayden Christmas to WIN! We need your vote! You can vote once every day until May 10th. If you answer the bonus question, your vote counts double for Brayden. Thank you for making a difference in the life of this wonderful boy and his family!

Click on the links below to vote for Brayden and show support!

VOTE HERE

"LIKE" BRAYDEN'S RIDE PAGE ON FACEBOOK

BRAYDEN'S STORY

BRAYDEN IN THE NEWS

Wednesday, May 01, 2013

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

Thursday, April 18, 2013

Uveitis Check-up & Rheum Appt

At the beginning of the week, both Mia and JJ had uveitis check-ups at MERSI. JJ still goes every six months and Mia goes every three months. Both kids got great reports - eyes are CLEAR!!

Today, Mia had a rheumatologist check-up with Dr. Miller. She just had labs done a few weeks ago and those came back fine. We have weaned her down from 12mls of Indocin to 6mls (she just takes it in the morning now). Dr. Miller had hoped by this appointment we'd be able to completely eliminate the Indocin altogether and Mia would just be on the weekly injections of Methotrexate. However, during the physical exam, Dr. Miller noticed Mia's elbows have fluid on them and are swollen - the right more than the left. The right elbow is the one that she had drained when she was three years old. Her elbows don't bother her, but when Mia tries to touch her hands to her shoulders there is pain. Dr. Miller said they weren't bad enough to need to have them drained and injected - just something to keep an eye on.

With that said, Dr. Miller told us to stick with the current dose of Indocin and not change anything just yet. She was concerned if we took her off of it, she may have a really bad flare and wanted her to have a fun and enjoyable summer. Other than the elbows, the rest of her joints look great! No fluid on the knees, toes look good, ankles, fingers, hips, spine, jaw, neck, and wrists all fine!

So, after Mia showed Dr. Miller how she can do center and side splits and then performed her ballet routine, which Dr. Miller was thoroughly impressed with (and makes notes in Mia's file of what she is able to do), she told us she would see us in three months from now.

All in all, we are very happy and thank God for Mia's good report today and for clear eyes for our kids this week!

Prayer request - We will be heading back to Tufts in Boston tomorrow because our youngest child (2yo) will be having a tonsillectomy and adenoidectomy. We have gone through this procedure with our two oldest kids, so we are "old pros" at this point! He will be admitted afterwards (standard procedure for kids 3yo and under). Please keep him in your prayers as he is still fighting off a bad case of bronchitis (which the doctor believes was caused by the tonsils). We are believing all will go well tomorrow with the procedure and he will recover quickly without any complications. Thank you!