So as of a couple days ago Connor is now officially on 0.75 ml of Prednisone. We are getting closer and closer to weaning him of those wicked Steroids and we are very excited about this. It is not just his physical appearance that has changed again but also the mood swings and all the beauty that comes with Steroids is going away. We are now scheduled for a Bone Density on June 28th when we will try to coordinate his next IVIG infusion. We are, as you can see, also pushing out the frequency of his infusions. We went from four weeks to five weeks last month, and we are now pushing it to six weeks. This will mean we have our next infusion at TCH again so we only have one trip to make that week.
Do you recall when I posted about Connor's sever headache last week, two days after the Infusion? I told Dr. Soep about it and she e-mailed me back that it most likely was due to the IVIG as she had received a message from the Center of Cancer and Blood Disorders at C-Springs that they have done a faster infusion with Connor, as they do with all the kids that never had any prior side effects to IVIG. As a result we will now go back to 6 to 8 hours. I thought it was to good to be true to be down to 3 1/2 hours... Oh well, live and learn and I am so glad that horrible headache only lasted one day for Connor.
Those are the JDM news for today and we are gearing up to a week of school. I am back to dreaming that we might be able to stay home some of the days as I was in my car for six days out of seven last week.
Ron left for Anchorage again and if the loads would not have been red and oversold we would have attempted going with him. I know, I am a contradiction after I just wrote we needed some time at home for school :) Traveling will always be worth the effort, it is as you see our trips to the Doctors and Therapy that we are not so excited about. It would have been wonderful to see Niki, Alexander and Harlow but if it won't happen this summer in Alaska then I am very hopeful we will see them lots more times once they move to the lower 48 come August. Leave it to our boys to plan a whole trip to see them :)
As to our JDM Family that is still in the hospital we are not sure yet what was and is the cause but I am hoping they will get answers today.
Wishing all of you a good week.
Hugs,
R A C A
Do you recall when I posted about Connor's sever headache last week, two days after the Infusion? I told Dr. Soep about it and she e-mailed me back that it most likely was due to the IVIG as she had received a message from the Center of Cancer and Blood Disorders at C-Springs that they have done a faster infusion with Connor, as they do with all the kids that never had any prior side effects to IVIG. As a result we will now go back to 6 to 8 hours. I thought it was to good to be true to be down to 3 1/2 hours... Oh well, live and learn and I am so glad that horrible headache only lasted one day for Connor.
Those are the JDM news for today and we are gearing up to a week of school. I am back to dreaming that we might be able to stay home some of the days as I was in my car for six days out of seven last week.
Ron left for Anchorage again and if the loads would not have been red and oversold we would have attempted going with him. I know, I am a contradiction after I just wrote we needed some time at home for school :) Traveling will always be worth the effort, it is as you see our trips to the Doctors and Therapy that we are not so excited about. It would have been wonderful to see Niki, Alexander and Harlow but if it won't happen this summer in Alaska then I am very hopeful we will see them lots more times once they move to the lower 48 come August. Leave it to our boys to plan a whole trip to see them :)
As to our JDM Family that is still in the hospital we are not sure yet what was and is the cause but I am hoping they will get answers today.
Wishing all of you a good week.
Hugs,
R A C A
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