Wednesday, September 28, 2011

Great news at eye appointment

Today we had a eye appointment up in Minneapolis. The morning started off really bad. Brynley decided she didn't want to go to bed last night until after midnight. My alarm went off at 4 and I slept thru it for quite awhile which I never do. We got Brynley dropped off at Great-Grandma's house and headed to Minnesota. I always leave about 15 minutes early because of the morning rush hour up there is horrible. Well today it was the worst it ever has been! There was a stalled car, a car accident and then the normal heavy big city traffic to make things difficult. We were in stop and go traffic on the freeway for 35 minutes. Then when we made I got lost at the clinic (new building and only the 2nd time I have been to this one). So we were 25 minutes late to Jackson's appointment, luckily they were understanding and didn't make us re-schedule. This was a great appointment, both eyes were clear of cells! Dr. Bothun gave us the go ahead to stop the steriods in the eyes finally. He has been on them 16 months and prolonged use can cause glaucoma and catarats. we have to go back in 2 months to see if the eyes are still good. If they are then in 6 months from then we can maybe talk about stretching the iv infusions of Remicade out to every 6 weeks instead of 4. Then if everything is still good after that we can start decreasing the methotrexate injection dose. These are all maybes if his disease does not flare up. So I am hopeful but yet nervous. This disease can be so quiet and then flare up with a big boom! Jackson started school recently, 4k and he is still in group speech therapy this year. He loves it and is doing so well. I am just hoping he can stay somewhat healthy this year. Wishful thinking I am sure with having a comprmised immune system. We go to see Dr. Vehe (rheumotologist) on the 10th and have a infusion that day also. I am going to talk to his doctor about some stomach pain Jackson keeps complaining about almost daily. He is also having at least3-4 bowel movements everyday that are not normal so something is going on. Just not sure if its related to the JRA or side effect of the meds or something completely different. I don't think its the meds since he has been on them over a year now. Jackson continues to be a great big brother and loves his sister a lot. Tomorrow is my first day back to work. I have been very emtional about it all day. I am so not ready, I would love to just stay home with my babies. It has been great being home with them and getting Jackson to and from school. Thankfully I only work 3 days during the week and the kids go to great-grandmas so there not at daycare. It would be nice if Brynley would go to bed before 11pm at night so I could since I have to be up at 4am when I work. She sleeps great at night 5-7 hours straight once she finally falls asleep!

Thanks for reading and please continue to pray for Jackson to make it to medical remission sometime in the near future so we can get him off these nasty drugs at least for a little while!

Thursday, September 15, 2011

Its been a long time!

Wow it has been so long since I have updated this site!

Jackson is doing very well! His joints have stayed good for the most part. Occasionally he gets some fluid and swelling in his knee but it goes away as soon as we do the next infusion. We see Dr. Bothun on the 28th to check the eyes. Its been awhile since we have seen him so I keeping my fingers crossed that they are clear! He only takes 1 eye drop a day now. The infusions have been going so good since we got the insurance to approve it as a outpaitent treatment. Before Jackson would have to be admitted to the Children's Hospital and get his treatment. Now we go to the Children's Hospital but we go to the infusion center which is outpaitent and it cuts the time in half! When he was admitted we would be there from 8am til 8pm, now were there 7:30am til 12:30pm! Makes life a whole lot easier. If his eyes are good on the 28th we may even decide to push the infusions out to every 6 weeks which would be nice. The summer gave us a nice break from all the sickness. Becuase of the meds Jackson takes his immune system is commpromised so he was always sick. So I am bracing that with fall here and winter coming that this winter will be no different:(.

We had a baby girl on July 28th. Her name is Brynley Elizabeth, weighed 6lb 5oz and 19in long. We are so blessed! Jackson loves her a lot and is very helpful. He is a little jealous of our attention though and has been acting out a lot but were working on it.

Well thats it for now. I will try and update after the appt on the 28th!