Report on our trip to Connecticut

We have been trying to keep everyone posted on our trip with Matthew to see Dr. Jones (pictured here with Matthew) in New Haven, Connecticut through facebook, but we realize this is missing some people. We left last week on Sunday December 19th, drove to Phoenix and flew from Phoenix to Hartford, CT on Monday the 20th. The weather across the country was clear and the connections were all very smooth. Matthew's appointment with Dr. Jones was on Wednesday the 22nd. We spent two hours with the doctor and he asked many questions and answered many more. He ordered many different blood tests (Matthew told me they filled 10 vials) which will be coming back over the next week or so. The results of these tests will help Dr. Jones determine whether to advise to begin treatment of Lyme disease or not.

He advised that we should continue the course of treatment for the Juvenile Rheumatoid Arthritis. Pending the results of the blood tests he will determine whether or not Matthew has Lyme. If Dr. Jones diagnoses Lyme in Matthew then he will begin a course of oral anti-biotics.

We came away with a real sense that Dr. Jones knows what he is talking about when it comes to Lyme disease and it is clear that he knows how to talk to and treat children. Matthew liked him very much and the questions that he asked Matthew indicated that he has been working with kids for a long time (30 years!) All that said, when the tests come back we feel that we can trust Dr. Jones one way or the other and that we are not being brushed aside by someone who is either too busy or doesn't know enough about it.

So now just a little more waiting. Thanks to everyone who has helped us on this leg of the journey with prayers and financial help. It has been such a blessing to have great friends and family to lean on along the way.

And as a final word, a little update on Matthew. In October of 2008 he began taking 10 mg of prednisone every day. At that time it was to control the fevers that he had been battling and stop the inflammation that was ravaging his body. Over the course of time his fevers subsided and he began additional treatments (at first an Enbrel shot once a week and now Orencia through an I.V. once a month along with Methotrexate and Leucovorin pills once a week.) His symptoms for the past couple of years have manifested mostly as swollen and achy joints (especially ankles, wrists and sometimes knees and hips.) Over the past 3 months we have been gradually stepping down the amount of prednisone he is taking because we are just not sure what long-term effect the cortico-steroid will have on his body versus the relief he is receiving from it. He is down to alternating between 5 mg and 2.5 mg daily. His right wrist is swollen most days and his ankles are often stiff especially in the mornings and evenings. Thankfully, once the pain subsides during the daytime he can carry on like a normal almost 8 year old boy.