Hi All! First and foremost, we are so very honored and humbled by all the love and support that is being sent our way. Its really amazing. Truly. I cant thank everyone individually but please know we are so grateful and blessed. Evan felt well enough to look at and read some (only some because there are so many) cards and get well wishes. I didnt even go into the FB messages for him. As for his update, three days ago, we were wondering if our little spitfire of a child was coming back and would be able to communicate with us, 1 day ago, he looked at me and said mom and tried a lopsided smile. Yeah, I got teary eyed. Weird how not hearing a very simple word and a smile from your child in a few days makes you a bit emotional. So far, meningitis, lupis and one starting with a c have been essentially ruled out. There are many more labs out but finally Evan is responding to the steroids. He can talk with us (albeit he still sometimes fights to pronounce words or find the words he wants) and will occasionally forget what he was told a few minutes before. We are hopeful that he will regain all of it in time. It looks like we are in for a medication change which will likely result in an iv steroid infusion once a month until the new drug builds up in his system. The downside, it will be a 3x a week subcu shot instead of once a week. Not going to be fun. In the meantime, we are working on making sure he can still participate in baseball even though he will not be in any condition to try out, get his IEP in place and make sure he can transition back as smoothly as possible with whatever issues remain. Again, we are very thankful to each and everyone of you who have helped and also those who have sent positive wishes and prayers on Evans behalf. Its been a very rough few weeks but we are hopeful that it will be getting better. Much love to all of you.
Posted on: Fri, 23 Jan 2015 04:45:42 +0000
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