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!
1 year ago