I figured it's seriously time to update this blog. It really has been a while. Luckily, not much has happened with Charlie. A few months back we got the go ahead to take him off his antibiotics. But, about 2 weeks after that he got a fever so we put him back on them. Fortunately, his labs were good and no cholangitis. Then mid April we tried again to take him off the antibiotic but after missing only 2 doses he started getting sick but no fever. And, as luck would have it, I was in the hospital in labor at the time:) So, even though he didn't have a fever, we started him up on the septra again. Turns out, it was just a normal cold that all the other kids got as well.
For the time being we're keeping him on both meds for a bit.
Thank you so much for sharing your Charle's blog. He is so beautiful. I'm so glad that the Kasi has worked for him so well. I pray that you never have to go through a transplant. I loved the pictures of the twins together. What a difference. Isn't it amazing how important the liver is?
ReplyDeleteOur little boy is Etienne, his sight is Carepages.com/carepages/Etienne. You can go back and see pictures of his old liver and read about his transplant. We did not start a blog until Aug 2008 still in hopes that he would get better without a transplant.
So our boys are practically the same age. Charlie in June and Etienne on Aug. 2, 2009.
My email is TNTNeil@Thomneil.com or I'm on facebook - Tresta Neil and Thom Neil.
Love to hear from you.
I was amazed to meet you and see that you had more children than just one and that you had another after Charlie. Thank you so much for sharing your story with me, it gives me great hope! You are awesome!