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.

Surgery

This week like all other weeks was busy, except I had my own doctors appointment as well which made it kinda tricky. Thank goodness my husband's employer lets him make his own schedule because I can't be in two places at once. Clinic went well for James this week all counts are still good. He only had PT on Tuesday this week since he had surgery. He is getting so strong and can stand with very little support. Wednesday I had to check him in for surgery at 7:30am. His surgery wasn't scheduled till 9:30, thankfully they had toys and movies for him to use while he waited. His doctor ended up assisting in a surgery right before James' so we had to wait even longer. James didn't actually get taken back till 10:40. It took about an hour for the surgery and then they wait about 15 minutes after before they let the parents go back. James doesn't like coming out of anesthesia, he always cries a lot and doesn't like the nurses to touch him. They had to put an IV in his hand and he hated it. He kept asking the nurse to take it off. They also switched his NG tube to his left nostril and he hated that. Thankfully we did not have to stay overnight. They originally told us we would but his doctor thought he was doing so well he didn't need to. He was very tired the rest of the day but refused to take a nap. He slept very well last night. He's in a little pain but James is so tough he doesn't ever tell you he hurts until it's a lot of pain. Today he won't go to PT so he can rest and relax. Although a 3 year old doesn't really want to hear that he needs to take it easy and not crawl around too much. Tomorrow we meet with the Radiation Oncologist to see what his plan would be for James. Over the weekend we will definitely have a lot to think and pray about.

To eat or not to eat?

Yesterday was clinic day and everything is still looking great. James only has to go to clinic once a week now instead of twice. They decided to just keep James' feed at 45 because they think that is plenty of calories. They also told us yesterday to start turning his feed off about 4 hours before dinner so that by the time we get to dinner he will be hungry. They want him to get into the habit of eating again. That is going to be quite the challenge because getting him to take one bite is hard. He is still all set for surgery next week. We met with his surgeon to just go over everything and James will have to stay over night in the hospital just to be monitored. He has started all of his therapies regularly this week also. He gets pretty worn out after physical therapy but he's doing a really good job. James' hair has started to grow back! When people comment on it he tells them he doesn't have very much. He has started talking like Zoey lately so we are constantly telling him to talk like a big boy and not a baby. He is pretty excited to have "another Zoey" in a couple months. Hopefully he won't be too disappointed when he finds out he can't really play with his new sibling just yet. He loves people to come over and just play with him. He is also very anxious to go visit his grandparents in Utah. All in all he's doing a great job!