We had a good trip down, leaving Wednesday afternoon (May 14th). Hayden and Jonah came with us this time, because they both didn't want to stay home again (especially Jonah, he hates being left alone!).
We got to swim when we got to town, and watch a little of the NBA finals, which is fun for us since we don't have dish or cable. It was a relaxing evening, and we didn't have to be up early the next morning, so we all got good sleep!
We met with Jaxon's neurologist first, mid morning. She checked him out, and felt like all his neuro tests looked good that day. And we signed papers to go ahead with his scheduled spinal tap at 1 pm.
Jax handled the tap like a champ once again! He amazes me, and SO many people around him. The nurse that help him out can't believe how well he does!
Before and after the spinal tap!
That was it for the day for Jax, which was really good cause he was in quite a bit of pain the rest of the day. His back was super sore, and he had already been hurting in both his left knee and hip. His knee was huge, and was good for his neurologist to see. Like she said, she doesn't really see that kind of stuff often, so then our request to get him back on his Actemra (his arthritis meds), was proven!
Jax and I just relaxed at the hotel (Jaxon just needing to lay flat, and try not to do too much), while Jeremy took the other 2 boys to visit his Grandpa at the home. His Grandma met them there, and they all had a great time playing bingo. I guess Hayden did a really good job, winning quite a few quarters. Jonah and Grandpa had the same exact card, so he helped Grandpa make sure he got all the numbers :) After bingo they all came and picked us up and we headed on over the the Canadian Honker for supper!
The next morning we met with his neurologist right away after his blood work. She had looked at the spinal tap results and was pleased. His opening pressure was down to more of a normal pressure at 278 mm/H2O. They took enough off to get it down to 238, so he was doing pretty well there. We are hoping the reason for his high pressures is the mixtures or 'stew" as his rheumatologist says. We already had his Actemra (arthritis meds) the Monday we got back, and he is feeling pretty good after that, but it took awhile. We just need to stay as far away from steroids I think, going up and down, on and off that is the kicker! So for now we will do checks with his neurologist whenever we come down, and his ophthalmologist every 6 months to make sure his eyes are okay. That is where and when they get really concerned, is when it starts affecting his eyes...if that starts happening he will get a shunt to protect his eyes, and drain that fluid. But for now we just watch, cause it has come down to a normal pressure.
We also saw his favorite doc, Dr. Mason. He is just the best, and was happy that we were over the anti-Actemra 2 months, cause his knees and hips were pretty bad! Otherwise it was a pretty easy check with him too. And that was it....and because we got in early to see Dr. Mason, we got to go home early and beat all of the NASTY Friday evening traffic coming outta the cities! We even made it home and even had time to take a little nap (Jeremy and I, of course...the boys had slept almost the whole way home!). I will post about our AWESOME next day soon, so stay tuned!
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