Tuesday, May 20, 2014
First Mediport access
James has been doing well. His chest is healing nice and last night we took off all the tape they put on. It's a little sensitive still, sometimes I accidentally push on it when I pick him up. I always feel so bad cause he will cry that it hurts. He had his first time getting it accessed which means they stick a needle in it and get his blood. They told us the first couple times are the worst but he did so great. They give you this numbing cream to put on it before you come in but it doesn't help much, or maybe I didn't put enough on. Eventually he will only have to get his blood checked once a month instead of every week. He is still doing his therapies every week. He took 3 steps on Sunday all by himself, we were so excited for him. It's the first time he's been able to do that in almost a year. They turned his feed time down to see if he will eat more. The goal is to get him off tube feeds by the end of next month. They said if we turn it off longer maybe he will be able to eat more. We met with his Radiation Oncologist last week and he told us what he thought. They can't do anything till after June so we don't have to make any decisions for a little while. They said we would probably wait to do anything till after his next set if scans in July. Other than that James is doing well and staying nice and healthy.
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