25 Jan Update
I just wanted to post an update about Keegan’s cylex function that we received this week. This is the test to determine how his immune system is functioning. Keegan’s level came in at “low” which means his immune system is very suppressed. This is good and bad – it is preventing rejection since we’re still in the critical first-year window, but it also puts him at an increased risk of infection. The good news is that it is higher than it was when they last tested in November, a good trend. While it makes us very nervous that he’s not closer to the moderate range especially during flu season, it also gives us some hope that Keegan won’t need as much medication to reach a proper level of suppression. Remember the goal is to only suppress the immune system enough to prevent rejection without making him overly susceptible to infection; it’s a very difficult balancing game. However, if you remember from a few posts ago, Keegan’s level of the main anti-rejection drug just recently hit their goal for 3 months post-transplant. His had been at a level that would be great for someone a year post-transplant, but they wanted it higher for now. SO that means that his immune function was effectively suppressed even with a very low dose of the anti-rejection medicines. As we get closer to the one-year mark and start stepping down his suppression, we’re more hopeful now that he won’t have to have as much medication or as much suppression to remain healthy.
Another inspiring story in the transplant world …. there is a 15-year old girl in Australia whose body miraculously adopted her donor’s blood type and immune system. Scientists are researching her case to see what can be learned – always promising information for Keegan. You can read about this story here.
Lastly, there are new pics and video of the Little Bug here. He’s getting to be quite the little ham. He has lost interest in the rice cereal, although we still try it every night. Turns out his bib is much more interesting than eating; we even tried a plain paper towel that wouldn’t be quite so attention-grabbing, but he still prefers the paper towel over the cereal. He’s sleeping ok these days but not quite like he used to do. I know that’s typical baby stuff, but you know that everything that changes with him makes us wonder if something more is wrong. Overall, we’re just trying to survive being stuck in the house during the last week of cold, nasty weather. We hope y’all are staying warm and doing well too. Thanks for thinking of and praying for us!