Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 I haven't been here in a while, I think I have been recovering from our fall and winter. Avery is doing wonderful! He had a little flair while weaning the prednisone and getting a cold but we bumped it a little and he recovered quickly. We are back down to 10mg of the prednisone again and will wait till June to start weaning again. He has stopped gaining weight at that dose! lol He looks so good, and so very healthy. He is finally pain free. It took a long time for the rilonacept to work all the way but for now that horrible disease is being controlled. Avery now has a girlfriend! They are so very sweet together, she has down syndrome too. They have known each other all their lives but haven't seen each other in years! They found each other on facebook right before he got sick, she thought he was hot when she saw his picture. She called him when he was in the hospital and they have talked and chatted since. He asked her to his prom and she said yes! They are both so excited. lol Since we live so far out she is coming with her mom for the weekend. They will stay in a hotel in town. Avery is going to take her on his first date to a movie the night before. It really makes my heart so happy, it's been a long road and it's so nice to have this joy. She sends me messages on facebook telling me she loves my son, life doesn't get any better. It's just so nice to have this normal. I'm going to try to catch up with everyone. Amy mom to Avery 17 systemic Quote Link to comment Share on other sites More sharing options...
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