I don't have many regrets in my life, but one is that I didn't decide to blog sooner in life. I would love to have a written account of all things Demon when he was young. As an infant in the hospital, dealing with health issues, first steps, milestones. Yeah yeah, the perfect parent remembers the exact date of their childs first step or the very moment in time that their child had their first bite of solid food.
I'm not that parent. I've never been that parent.
This blog has been a wonderful venue for me to vent and write out my concerns about the Demon and his Ulcerative Colitis. My hope is, that his current flare is soon to be over and, I'll be able to look back on this blog for points of reference when a future flare may occur. Odds are, probably I am the only one that continues to read once the topic of Ulcerative Colitis appears in a blog entry. lol
We went to his doctor this past Thursday (9/9). Verdict - we begin to taper his steroid in a week by 5mg. And then down by 5mg each week afterward. As long as he continues to improve we continue with the regimen that he is on currently. Should he start to go more frequently as we taper (and honestly, I think this is what is going to happen)... we have to start thinking more about the Remicade vs surgical treatment. I am so fortunate to know people with pharmaceutical knowledge. I also have a few friends that have been, unfortunately, diagnosed with Crohn's Disease. They, too, have been a huge support system.
On the plus side, even throughout all of his problems he is doing incredible in school! I am so proud of him to be able to rise about this illness and not let it slow him down. He amazes me more every day.
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