Tomorrow is February 22. It is Peter's one year anniversary home from Children's Boston... after being hospitalized for nine straight months. Way to go Peter!!
We go up to Boston again shortly. (I mentioned in the last post that we were making plans; they were for this upcoming visit.) We had been hoping that his direct bilirubin would have hit 0.4 by now, but he had a slight bump in the bili mid December and it just is not budging back down again. He was 1.5 again on Monday, with the total at 2.8. The lowest Peter had gotten was 1.2 direct and 1.9 total. On the flip side, his albumin has remained at a better number, with 2.5 this past week and 2.9 two weeks ago. These numbers are up from 1.4 back around late June, and I am thinking we were even down around 1.2 or less in August. AND, his liver function tests have improved overall. The bleeding times (INR, PT, PTT) are still off though.
So, we will see what the good doctors in Boston have to say while we are there. Peter has come so far in this last year, especially considering that for the first half of that year home his health went up and down several times to the point we even had him actvely listed for transplant. We are praying that Peter remains in good form while we are there and really does an impressive job showing off. His homecare nurses have been phenomenal in helping him work on his PT and OT goals, and he has much to demonstrate. Last time we were in Boston he just took a nap... everyone ooohed and aaahed over his lack of jaundice and his nice weight gain. When he was awake, he pretended not to know any of his colors or shapes or animals while others were in the room, regaining full knowledge once it was just him and me again. Come on Peter, we're counting on a real show this time!
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