Sunday, May 8, 2011

May marks the one year anniversary of Jackson's diagnois

I have gotten so bad at keeping up with blogging! April was a very rough month for Jackson. He was pretty much sick with a could the entire month. Then a few weeks ago he came down with a high fever while I was at work on a Sunday. He had also threw up that morning. I came home from work and he just laid around all evening. I had to work Monday and so did Mike but my Mom was babysitting so I felt ok going to work knowing he was with my Mom. His fever seemed to go away that day and he was doing ok. I still took him to the doctor after work to have him checked out. We couldn't get in to see his normal ped so we saw someone else. I hate seeing someone else who doesn't know him as well or his history or disease. So of course I got the he is fine, its just a virus. When we got home he seemed to be feeling better and it was beautiful out so we played outside for awhile. Then later that night of course he spiked a fever again. The next day the fever went away but Jackson was sleeping a lot and miserable. He kept spiking high fevers at night and everyday seemed to be getting sicker. I was off work Tuesday and Wednesday but went back Thursday. There was extra staff so I left right away and came back home. It was still early so we waited for urgent care to open and I took him in. He had a ear infection and pneumonia. The doctor hesitated at calling the rhemotolgist about admitting him to hospital but decided not to you, thank goddness we were more comfortable at home. He started antiboitics right away. After a few days he started feeling better but he was only better for about a week and he ended up with another cold!!! I am so sick of Jackson being sick. That night Jackson slept in my bed and kept me up all night. I had to get up at 4am for work the next morning. I got up that morning and told Mike this was it, I was taking Jackson off his meds because I couldn't deal with it anymore. Of course I am not and I was just frustrated and very sleep deprieved. Mike reminded me of how much his joints would suffer and the pain he would have if we did that. I am feeling very overwhelmed, sad, and stressed.
May is arthritis awareness month and also May marks the 1 year anniversary since Jackson was diagnosed with JRA. Jackson has gone thru so much that it feels like he has been sick for years but its only been 1 year. I can remember like it was yesterday how awful this month was a year ago. We made countless trips to Minneapolis to the children's hospital being sedated and going thru test after test. We were told he may have horners syndrome, tumors, neuroblastoma, etc. The scariest time of my life ever!
Jackson had a eye appointment last week and his eyes are clear and looking great!!! I just pray it stays that way. We are decreasing the steriod eye drops to 3x a day for 6 weeks and then down to 2x a day and then 2 weeks at 1x a day. Dr. Bothun (eye doc) does not think we should we push the remicade infusions out to every 6 weeks. He thinks we would be pushing too much at one time and we should see how he decrease in steriods go first and if all goes well then stretching out remicade might be a option. I love the thought of going every 6 weeks instead of every 4 weeks but I have to agree I am a little scared to do too much at once especially since Jackson is still complaining of knee pain often. I just wonder if my little boy will ever get to a point were pain is few and far. It gets hard for me when we go places and he wants to be carried because he gets sore and being 6 months pregnant it is getting hard for me to carry him. I sometimes wonder if with all we go thru with Jackson and adding a newborn into if we aren't getting ourselves into more than we can handle. But I think it will be ok and we will adjust and it gives us something good in life to look forward too! I should also mention that Mike is going back to school in the fall so life is going to get really rough. Mike has a associates degree and is going to get his bachelors degree. I am preparing to pretty much be a single mom which is going to be hard but I know it will be worth it and make for a better life for us in the future.
I am now 27 weeks pregnant, 1 more week until 3rd trimester starts! I am feeling ok, a little tired and wore out. I wasn't working at the nursing home at this point in my pregnancy with Jackson so it was easier. This time I will work until the end and with my job being so physical and on my feet 8 hours I am wore out. But I keep telling myself only 13 more weeks. I have been trying to enjoy this time as I know the sleepless nights and craziness thats to come. But as I have been going thru all the baby girl clothes and putting them in her closet and I just ordered her crib I have been getting more anxious for her to be here. I feel a little overwhelmed with what needs to be done before she gets here. One of my major projects is the nursery. It is currently Jackon's playroom and I have no idea what I am going to do with all the toys in that room!


  1. Hi
    My name is Jenna and I came across your site. jackson is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ and an inspirational. I am sorry he is not well, and I hope he is feeling a bit better. I was born with a rare life threatening debilatating and degenerative bone disease. I also have arthritis, burcitis, tendonitis and Fibromyalgia. I love it when people sign my guestbook.

  2. Just wondering if you have checked this out for your son?