Jaxon has had a rough couple of weeks! He was scheduled for his hip injections, and other appointments, on May 28th, but we couldn't wait any longer. He has been in so much pain, not sleeping, and we knew that he needed some relief to be able to make it through the last part of school. Plus, summer baseball ( his favorite!) is starting the beginning of June! He has been more honest about how he has been feeling lately too, not just saying he's fine, which he does often, but saying " I really hurt, Mom"!
So, we left on Tuesday morning for an early set of appointments. Dr. Mason's nurse, Fran, worked lots for us to be able to get in early. I really didn't think it would work, cause just setting up the cortisone shots, with the anesthesia is a big deal, but God helped make it happen! We had a x-ray appointment at 4pm, and that didn't take very long at all, so we headed over to Grandma Knick's to pick her up, and go to visit Grandpa. They were doing good, and we had some good laughs together.
The next morning, it was an early start with his cortisone shots in both hips, and right ankle. They all love him around there, and the nurse said that everyone was talking about him, and the fact that he's the best kid around! He does so well with that kinda stuff, he woke up great and we were off to his next appointments. We saw physical and occupational therapy, which was great help. We got new good tips, on how to help him sleep better, things to do to preserve his joints, and new exercises to strengthen his muscles and joints. The last appointment was with Dr. Mason, and it was the hardest! He showed us the x-ray picture first, and even before he started talking, Jeremy and I could see that it was bad! He explained that the hip ball joint, and bone, should look like a smooth, ivory mushroom. Jaxon's right hip didn't look right at all, it is basically bone on bone. There should be spaces between his bones above the hip, and the leg, and there was none. It also should be smooth and white, where Jax's looked bumpy (kinda like coral), and lots of dark spots. Dr. Mason was pretty concerned about it, there is a lot of damage to his hip, because of his disease. So much damage, that he will most likely have to have a hip replacement in high school. We have to wait until then, because they just don't do that surgery that young, and he has to be done growing. Wow, that was hard to hear! We have to start another plan of action asap, because we are getting no where fast! There is a new medication that has just been approved by the FDA, it was made especially for Still's disease, which is Jaxon's type of JRA (you can read more about Jaxon's type of JRA, in an article, on the right hand side, of our blog). It would be a once a month IV infusion, that would have to be done at Mayo. Dr. Mason seems really ready to trying it, we have been talking, and praying about it for awhile, and feel it is the right move. The cortisone shots he just had, should give is a little time, so he can finish school. We will be starting that in July, and seeing how it goes for 3 months, then reevaluating it from there. Meanwhile, we are going to bump up his other meds, just to see if we can get anywhere. We are changing his motrin to naproxen, to see if it helps with his pain. No matter what we do, his hip is going to be giving him pain, because of the damage, so that is where the naproxen comes in.
So that is the low down, I know it is long, but it's so hard to explain, that it just needs to come out, how it is in my mind. Sorry, and thanks for listening to me! We will just take one day at time, and rely on God! We have really nothing else to go on right now, and we do serve a big God, that has everything in His hands! We have to leave it there, everyday.
I want to say "Thank you", to you all, who have been praying for us! We can feel it everyday, and when we feel overwhelmed, we remember that!
So, we left on Tuesday morning for an early set of appointments. Dr. Mason's nurse, Fran, worked lots for us to be able to get in early. I really didn't think it would work, cause just setting up the cortisone shots, with the anesthesia is a big deal, but God helped make it happen! We had a x-ray appointment at 4pm, and that didn't take very long at all, so we headed over to Grandma Knick's to pick her up, and go to visit Grandpa. They were doing good, and we had some good laughs together.
The next morning, it was an early start with his cortisone shots in both hips, and right ankle. They all love him around there, and the nurse said that everyone was talking about him, and the fact that he's the best kid around! He does so well with that kinda stuff, he woke up great and we were off to his next appointments. We saw physical and occupational therapy, which was great help. We got new good tips, on how to help him sleep better, things to do to preserve his joints, and new exercises to strengthen his muscles and joints. The last appointment was with Dr. Mason, and it was the hardest! He showed us the x-ray picture first, and even before he started talking, Jeremy and I could see that it was bad! He explained that the hip ball joint, and bone, should look like a smooth, ivory mushroom. Jaxon's right hip didn't look right at all, it is basically bone on bone. There should be spaces between his bones above the hip, and the leg, and there was none. It also should be smooth and white, where Jax's looked bumpy (kinda like coral), and lots of dark spots. Dr. Mason was pretty concerned about it, there is a lot of damage to his hip, because of his disease. So much damage, that he will most likely have to have a hip replacement in high school. We have to wait until then, because they just don't do that surgery that young, and he has to be done growing. Wow, that was hard to hear! We have to start another plan of action asap, because we are getting no where fast! There is a new medication that has just been approved by the FDA, it was made especially for Still's disease, which is Jaxon's type of JRA (you can read more about Jaxon's type of JRA, in an article, on the right hand side, of our blog). It would be a once a month IV infusion, that would have to be done at Mayo. Dr. Mason seems really ready to trying it, we have been talking, and praying about it for awhile, and feel it is the right move. The cortisone shots he just had, should give is a little time, so he can finish school. We will be starting that in July, and seeing how it goes for 3 months, then reevaluating it from there. Meanwhile, we are going to bump up his other meds, just to see if we can get anywhere. We are changing his motrin to naproxen, to see if it helps with his pain. No matter what we do, his hip is going to be giving him pain, because of the damage, so that is where the naproxen comes in.
So that is the low down, I know it is long, but it's so hard to explain, that it just needs to come out, how it is in my mind. Sorry, and thanks for listening to me! We will just take one day at time, and rely on God! We have really nothing else to go on right now, and we do serve a big God, that has everything in His hands! We have to leave it there, everyday.
I want to say "Thank you", to you all, who have been praying for us! We can feel it everyday, and when we feel overwhelmed, we remember that!
