Jaxon's medical update

It has been a long time since we've updated anything, and there seems to always be something to tell, so we are pretty behind. Last time I posted anything, it was basically the beginning of school, and Jaxon had started his new medication. He switched from 2 of his shots a day, to an infusion once a month. It is a new medication, that hasn't been tested in the States (on kids). He had 3 infusions in Rochester, and they went really well. His blood work was amazing, it changed very quickly, and was as normal as it has been in over 4 years. He was still on steroids, but his Dr. felt like we could go down pretty quickly on those. After those 1st few ones we started having the infusions in Fergus, at the Cancer Center, which was so nice! Jaxon had a great start to the school year, then fast forward a couple months.........
We are pretty much back to where we were before, the roller coaster, but his blood work has still been holding pretty well. He has been in his wheelchair at school most days, and has been in quite a bit of pain. He has had a couple big deals also, that have set him back. Before our last trip to Rochester (right before Christmas) had an eye appointment, and they saw some Optic Nerve swelling. I wrote a little thing for facebook, so here is that post...We went to Fergus for Jaxon's yearly eye Dr. appointment, yesterday. He had great vision, but the doc saw swelling of his optic nerve, called pailledema. I really had no clue what he was talking about, but he was concerned and called a few people, and Jax's doctor in Rochester. We had an MRI right away, and did some blood work. When I got home I started to do some research, and I am just so glad that I didn't know what it "might" be while I was driving home, in the storm! We did hear last night that the optic nerve on both of his eyes were swollen, and that usually means brain tumor, or some other serious infection, but both of those were ruled out! THANK GOD!! I still didn't really have answers as to what that means, so I called to talk to his Dr. in Rochester. He personally called me back this evening, (which NEVER happens, and made me feel SO much better!) and said that he felt it was rare, but the roller coaster of steroid use is what is probably causing this, and going up again will help bring the swelling down. He didn't think it was the JRA inflaming his eyes, which I was concerned about! We will have to go to the eye doc again, now every few weeks for awhile to see if the pressure and swelling go down. We will also just have to add this to another thing we need to keep on top of! He isn't in any pain, right now at all. He was having headaches, but those have been less these last few days. But he does get blurry, or black out vision, that just lasts for a couple of seconds, especially when he is just getting up from sitting or standing. I feel a big relief now that I talked to Dr. Mason, and if we keep it under close control, it shouldn't affect his vision, right now! Thank you all, for all of your prayers, and encouraging comments! I don't really like to complain on here, because it just isn't necessary, but it so helped just to have your words, when I was obsessing, and worrying about it all day today, I went to those and really was blessed! He has been in his wheelchair, and in quite a bit of pain these last 2 weeks, that is disheartening for him most of all, but us as parents too. Watching him go from feeling really good, and pretty much a normal boy, to being in lots of pain is just plain hard, so prayer is wonderful!

We had appointments in Rochester last Tuesday and Wednesday, for Jaxon. It's amazing that we got down there, but we did, even though it took forever! After seeing the scans and pictures of Jaxon's eyes, his Dr. wants us to investigate further, next time we come to Rochester, which is pushed up to 6 weeks now. We will be seeing a neurologist, and probably having a spinal tap done. He said that he has never seen the eyes become affected like this and needs to be sure that there isn't some underlying issue going on. The great part about that, is that we know it's not a tumor, but it hasn't resolved as quickly as they would have liked! He has been having lots of headaches over Christmas, at least once a day, since Christmas Eve, and that wasn't sitting well with me, so I called his Eye doc in Fergus, just to make sure that was normal (wanted to make sure before our blizzard hit!!). They wanted him to come in and check his vision, and see if the swelling had got any worse. His vision is fine, and his nerve looked swollen, but maybe a little better, which is good. But his doc said that he really felt he had an underlying issue (something that's not related to steroid use). So he too recommended having a spinal tap done, which will show the pressure of the cervical spinal fluid, in his brain. If that is high, we know what is going on, and it could be a chronic thing, but in doing that, it will also relieve some of the pressure. Anyways, it's something that will be ongoing, and need to be closely checked on, if that's indeed what is going on! I know that again, this is a lot of information, but sometimes it's just easier to get it down so friends and family can read what's going on! I found a web page that explains it really easily, so you can read it if you want.

http://www.drugs.com/health-guide/optic-nerve-swelling-papilledema.html

So that's the whole scoop of his eye situation, these last few weeks. We went to see the opthamologist last week because he was getting nauseous while he was reading. But his optic nerves looked pretty good! It could come back, but for now, that area is back to pretty much normal!
Then last week he was having a great start to the week, but he fell at recess, and landed on his hip really hard. He didn't do a whole lot after that, and we had do have an x-ray just to make sure he didn't break anything (which he didn't)!
It has kinda been one thing or another, but he always has such a great attitude, and is ALWAYS smiling! 
Well there you have it, it's long but it is pretty involved!