The Fun Never Ends

For the last 4-5 months Brady has been suffering from leg pain that seems to get worse daily.  At first we thought it was a consequence of taking Brady off of his overnight oxygen. Despite putting Brady  back on oxygen, things did not improve.  Brady had a 4 day trip to heart camp, 2 weeks visiting grandma and grandpa in WA, followed by his mother having major surgery and she was basically not aware of anything going on!  Brady's pain intensified throughout the summer and fall, so an appointment was made to see an orthopedic doctor.  The appointment was set for the end of October.  A few weeks ago Brady woke up in more pain than normal and he said he didn't know how he was going to wait three more weeks to see the doctor.  I called our amazing pediatrician who ordered some tests and was able to get us in to Orthopedics that week.  Brady had several x-rays done to look at his legs (revealing fluid on his knees), and a doppler on his femoral artery to check blood flow (revealing great blood flow).  The orthopedic doctor wanted to remove the fluid on the knees and test the fluid.  This was done under sedation and the fluid revealed nothing, although the doctor removing the fluid noticed some damage to his synovial sack on his right knee.  This led to a referral to see a rheumatologist, which occurred today.

I'll be honest, when the doctor suggested seeing rheumatology I was anxious.  I started to imagine a life of pain for Brady that would interfere with his and our family's active lifestyle.  I was concerned with the type of life Brady would have to lead aside from his heart condition.  I was relieved to hear today, after receiving Brady's new diagnosis of juvenile arthritis, that it is treatable and with the right medicines he can be pain free.  I even learned that 25% of the time it will go away, never to come back again.  Brady is always in the small minority when it comes to medical conditions, so we can hope for the 25% right?

These are Brady's knees today after 15 cc's of fluid was removed from his right knee and 10 cc's of fluid from his left a week ago.  The doctor explained that the arthritis has been going on for a long time and because Brady is so tough and apparently doesn't complain of the pain he is feeling, we had no idea he was suffering. When an area of the body is swollen, like his knees, extra blood goes to that area and increases the bone size, hence Brady's really big knees are a sign of his arthritis.  

Not only does he have arthritis in both knees, but both shoulders and both elbows as well.  Before we can start a treatment plan the doctor will be talking with cardiology to determine which medicines will be okay with his heart.  We should hear back in about a week and start a treatment plan then.  

There is a 5% risk of developing Uveitis when you have juvenile arthritis, which is an inflammation of the eye.  Unfortunately, by the time you see that your eyes are inflamed the damage is already done.  What this means is Brady will have to see an eye doctor every six months to be screened for Uveitis.  

He cannot seem to catch a break, but he doesn't let it get him down.  He remains positive and upbeat wanting to make the most of each day.  

This past weekend we spent time in Goblin Valley and the Moab area hiking and repelling.  Scott has a new found love of climbing and rappelling and took the family on some new adventures.  We were all terrified, but we did a 90 foot repel into Goblin's Lair.  

 Amy is repelling, Addison is being lowered

Brady rappelling

We feel blessed every day that we get to enjoy life with Brady despite the challenges that come along with him.  He is a great young man and I know you all agree with me!