Tuesday, October 2, 2012

Uevitis is creeping back

So back in May both Jackson's doctors aggreed that his eyes and joints have been quiet for awhile that maybe it was time to start stretching the remicade infusions out to every 6 weeks instead of every 4.  Well a few months after doing that his eyes have now started to flare.  So disapointing.  I was not expecting this news at all.  Everything had been so good I just thought this appointment would be the same.  He also said one of his eyes was weaker than the other eye.  As far as that goes we will see how it is tomorrow at our appointment and if there is no improvement were going to try patch therapy before going to glasses.  Patch therapy is were Jackson would wear a eye patch over the strong eye for a certain amount of time to see if it will make the weak eye stronger.  If that doesn't work than we will probably be looking into glasses.  If there is still cells in his eyes tomorrow we will move the the infusions back to every 4 weeks.  His last rhematology appointment and infusion was 3 weeks ago and it went well.  No sign of flaring in the joints just some hypermobility and boney overgrowth.  He was suppose to get labs at the last infusion but the nurses didn't get the order so he will get them in 2 weeks at his infusion.  He also suppose to get a antibody for double strand DNA which I am not quiet sure what that test is all about.  I tried googling it but didn't get much.  I plan to ask Dr. Bothun in the morning. 
Jackson started kindergarten this year.  He loves school for the most part but he is very wore out from it.  Its been nice for me to get the one on one time with just Brynley while he is in school.  I am a little nervous as we go into flu and cold season but hoping it won't affect him to bad.  Hoping I will have time to update after the appointment tomorrow.

Thursday, April 19, 2012

Big decision to make

Its been a long time since I have updated this blog. Life with 2 kids keeps me very busy! Things have been going very well. Jackson has been doing so well. He has complained of knee pain here and there and some pain in his fingers. But nothing that has lasted more than a day or two. His one toe continues to be swollen and has some boney overgrowth. He is currently sick at the moment and has been for about 10 days now so I am hoping he gets better and not worse. This time a year ago he ended up very sick with pnemonia, so I am praying not to have a repeat. We just had a eye appt last week and his eyes are still clear!!! So awesome. Since we spend so much time in the cities at appointments and Jackson is always getting poked and prodded we thought it might be fun for Mike to take the day off of work and come with to the eye appointment and go to the Mall of America afterwards. It was a lot of fun. Jackson was so brave and went on a lot of the big rides and even the rollar coaster. The rhematology nurse called me yesterday to let me know that Dr. Vehe and Dr. Bothun talked yesterday and decieded that we could either push the infusions out to every 6 weeks instead of every 4 or be done with infusions and do a humira injection at home. This is a very difficult decision for us because there are pros and cons to both. I hesitate to switch drugs when this one is working so well. It would be so much more convient to not have to travel so much but yet I want to do whats best for Jackson not what is convient for me! It also worries me that humira can be a very painful injection and we are really having a hard time giving him his methotrexate injection that I feel humira would be worse and make even his methotrexate worse. So I guess I am leaning more towards staying with the remicade infusions and just trying to stretch them out to 6 weeks. If it works and he keeps doing good then maybe we could consider humira. I just dont know, I hate making these kind of decisions!
Jackson is doing very well in 4K, he loves school. I just can't believe how big he is getting! Next month marks the 2 year anniversary that he was diagnosed with JIA. It feels that we have been on this journey for more than 2 years! Jackson's little sister is almost 9 months old. Brynley has 2 teeth and just started crawling! Life is crazy and stressful at times but I love it!