Back to reality

We had a whole week off of doctors appointments and it was great. James had such a fun time on his trip. It was really hot which made walking around uncomfortable but we still had fun. James loved all the rides. He got to meet Mater in Cars Land and it was a little overwhelming for him I think because Mater was huge. I hope James remembers this trip.
He went to clinic yesterday and they took his NG tube out. As long as James continues to eat and doesn't loose weight he can keep it out. I hope we don't have to put it back in because James loves having it out. He had his neruo psyc evaluation done this week. Pretty much they test to see what all he knows and where he is at developmentally. We don't get the results for a couple of weeks. James had a hearing test done right before we left and we found out he has severe high frequency hearing loss in both ears. He's getting fitted for hearing aids on Friday. He also scheduled to have surgery on his eye next Thursday so lots of stuff coming up. I'm just happy we are getting him back to semi normal. I know he won't ever be how he was and that's ok. I'm just so grateful he's still here with us. I pray everyday that the Cancer will stay away. He has his 3 month MRI coming up in 3 weeks and it's always very nerve wracking.

More surgery

Well James saw the eye doctor last week and we received good news and bad news. The bad news is that his right eye has permanent paralysis on the 6th and 7th nerve. The 6th nerve moves the eye right left up down and the 7th closes the eyelid. Our only option for him is surgery. So that's what we are going to do. The good news is that his optic nerve is normal and fine. So the plan is to have surgery to fix the muscle so his eye will at least look straight a head. Then we met with a plastic surgeon who will do another surgery to fix his eyelid. He might never be able to move his eye to the right but at least he will be able to see better. He has also gained a pound since last week, yay! He has been eating more and more which is great. His therapies have been gong really well and he's getting so strong. Next week we are doing his Make A Wish trip. He wished to go to Carsland in Disneyland. He is so excited to go. He still has no hair on his head, they said its probably just taking a while since he's had lots of treatment. Today we go back to see the Audiologist about his hearing. My poor boy, I'm sure he's tired of doctors. I know I am.

Weight loss

James is still doing really well. He went into clinic today and everything is looking good. The only thing that is still a struggle is his weight. He lost a little weight so we are trying to figure out what to do. They put him on an appetite stimulant to see if he can get a little more hungry. Hopefully it works and he can start to eat more and gain some weight. His doctor isn't too worried about his weight but we definitely don't want him to loose anymore. Other than that he is doing pretty good. He is still going to his therapies every week. His PT has been going well. Today she had him try to ride a bike. It's pretty hard for him to push that right leg. It's funny you don't realize how much strength it takes to do simple things like that. Tomorrow he goes to see the eye doctor about his right eye. Hopefully they can tell us some good news. We were looking at pictures from this time last year and we have noticed his right eye has definitely gotten worse. I think I'm just a little nervous they are going to tell me it can't be fixed. James loves holding his baby brother and loves playing with his sister. He is such a joy to be around we love him so much.