MRI scan

James had his three month post treatment MRI this week. His scan came back clear! No cancer cells anywhere! We were so relieved that it was good news. He will have his next scan in January so until then we will just enjoy our time together and not worry about anything. He gets his hearing aids next week. Hopefully he adjusts ok to them. His eye is getting a little better. Sometimes it still doesn't close all the way when he sleeps. His next eye appointment isn't till December so we will see what happens. He is still doing really well during therapy. I'm always amazed at how far he has come in the last year. This time last year he could barely sit up by himself and now he's walking and climbing. Thank you to everyone for your continued prayers!

Going well

James is doing really well! He went into clinic today and has gained 2 pounds since they took him off his feeding tube. He is really enjoying food lately. His eye is still a little crooked but looks better than before. He wears an eye patch everyday for at least an hour to keep it nice and strong. He was fit for his hearing aids and will have them by the end of the month. We found out our insurance doesn't cover hearing aids and it was going to cost about $4000. Thankfully though his doctor said we would more than likely qualify for this program where this organization gives them to you for free. We are still waiting to hear if we got them. James is still doing OT and PT every week. Speech has been put on hold till his hearing aids come in. He had his neruophsyc evaluation and it came back that James is exactly where he should be developmentally. He actually improved since his last test in December. His next MRI is scheduled for Monday morning. It will take about 3 hours to get all the scans they need and then we wait for the call telling us good news or bad news. I hate it when it's MRI time, it makes me nervous. We are trying to get a couple fundraisers together soon. I'm so grateful to my Heavenly Father everyday that James is here with us and doing well.

Eye surgery

James had his eye surgery yesterday. The surgery went well and he is home and doing good. His eye isn't straight yet. They said it takes a week or two before its straight. His eye is a little puffy but looks good. It's kind of weird to be able to see both eyes now. He was supposed to get fit for hearing aids last week but he had too much ear wax. So we took him to his pediatrician to get it cleaned out. Today he is supposed to go back and get fit for his hearing aids. He picked a rusty orange color. He gained a whole pound since being off his tube! So as long as he keeps it up he can keep that tube out. Also he only has to go to clinic every two weeks now instead of every week. His MRI is in mid October. As long as it's clear then he will only go to clinic once a month until February and then he can get his port out. It's nice to be home this year for all the holidays. Hopefully James continues to have no Cancer cells and can enjoy being a little kid.

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.

Staying home is boring

James has been doing really well. Today he had PT and went to clinic. He is getting really good at walking. One of the goals is for him to not loose his balance and not fall, all week. He already failed, haha. He just starts going faster than his body is ready for and he falls. All his therapies are in the morning now which is super nice because he does way better and is really ready for nap after. He's getting better with his OT also. He has his eye appointment next week to see if there is anything we can do to fix it. He had a hearing test last week but fell asleep during it so we get to try again. He is still bald and it doesn't look like hair is coming in any time soon. He likes having a schedule and having things to do everyday. When he doesn't have any appointments he isn't really sure what to do at home. Staying home all day is boring for him. He is still playing with Zoey and having fun with his new baby brother. He asks everyday when does he get to go to Cars Land. He is very excited to go. We love having him home and we love knowing he doesn't have any more treatment to do. Hopefully it will stay that way.