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.
Wake me from this nightmare...
4 days ago