Today JT took 15 “bites” of water from a spoon during his therapy at The Children’s Institute. And he received his first homework assignment: we’re to take 1% milk and cut it 50% with water and get him to take 15 “bites” of it from a spoon. Also, we’re close to being able to give him bolus feeds during the day at a high enough volume that we can stop the overnight feeding pump.  So he’s making progress, slow and steady. The therapist told Jodi today that JT is “such a hard worker.”

They stopped at the dermatologist’s office too. Dr. Kress was adamant that JT not receive IVIG therapy at home on Wednesday. He believes that the skin flare-up is linked to the infusions and is very concerned about what a reaction might do when JT’s skin is already so bad. So Jodi consulted with Cincinnati and we’re going to wait and take him back down there next week. I hate to take him into the hospital but I guess that’s the current plan. 

Also, he starts back on steroids tomorrow to try to bring some skin relief. The doctors want to see what a two-week course will do.

So please pray for protection: by next week he’ll have been off IVIG for a month and he usually gets it every other week. Also, steroids suppress the immune system and he really needs to stay healthy.   Let’s hope they work wonders on his skin. Thanks.