Surgery #11

James had his special needs preschool evaluation this week and it went really well. He got in we just have another meeting in three weeks to go over everything. They did an eye test while we were there and told us we probably needed to take him in which thankfully he had an appointment with the eye doctor two days later. We went and saw his eye doctor which was the longest appointment ever! His old eye doctor had to take a medical leave of absence and they don't know when he will be back so we have a new doctor. Anyway he said James will need to have patching everyday for at least an hour. Also his right eye is near sided so he will need glasses but he can't get glasses till his right eye gets fixed. The doctor thinks he needs another eye surgery to try and make it straight. If it's not straight the glasses won't help so in August they will try to fix it again. The doctor said it is going to be a lengthy process because his eye is very damaged from the brain surgery. We know his eye will never be normal but we want him to be able to see well. Other than that he is doing great. He finished swim lessons this week and had so much fun. He's excited for school to start!

Having Fun

I didn't realize that it had been so long since I've update James' blog. He is doing great! Clinic this month was good. His platelet counts are the highest they have ever been, which is great. He had another hearing test and they said it's still the same which is good we don't want it worse. He is getting new ear molds for his hearing aids, which means his ears have grown a little. Hopefully he will start growing more. He's been about the same size this whole time. We found out we won't have to go to Houston this summer for his one year check up. They are going to just do it all here for us instead. He has to meet with a bunch of different specialist to check and make sure everything is going ok post radiation. We are getting James ready for preschool. He is being evaluated next week for special needs program. Hopefully he gets in because then he can get all his therapy through the school which would help. He's been taking swim lessons with his little sister and they have so much fun. James is really enjoying being a kid and playing and having fun! Hopefully things will continue to go well for him.

NED

James has been doing really well. He had an MRI on Monday and we finally got the results today. He is still NED(no evidence of disease)! We are so excited! The day before his MRI and the days after are so stressful and worry some. I'm so grateful Heavenly Father has granted us more time with this sweet boy! James also met with an eye surgeon to put the weight in his eye since it doesn't close. Well after we had his MRI we talked to the oncologist about it and he said right now we should wait to do that. Since he will be having scans every 3 months for a long time it's best to wait. The weight would interfere with his scans so we wouldn't get a great picture. He also had a hearing test today and his hearing is the same it was last time which is good. He'll have to get new ear molds as he grows but other than that he's doing good. He's still doing therapy and it's going really well. I'm so happy he's improving and growing strong. Hopefully everything continues down this path and he remains cancer free.

hanging in there

James still doing good. He went and saw the ent and his ears are nice and clear. He also went to clinic and all his counts are good. They are still concerned about him tilting his head. They said its a sign that something isn't right inside. James has been doing it though for a while so I think he's just trying to compensate for his vision or balance. He's getting stronger and enjoys being able to do things. He wants a bike for his birthday so in pt they are trying to get him strong enough to push one. He sees the eye plastic surgeon next week to talk about options for his eyelid. His hair still isn't comp back. They said it can take 2 years sometimes before it all comes back. He just looks like he has a funky Mohawk. Other than that he's doing really well. He should have another MRI sometime this month. Hopefully it's good news!

Clinic

James went to clinic this week. He is doing pretty good. His blood counts are all good. Hemoglobin is a little low but hopefully it will get better. He will be getting his next MRI in about 3 weeks. I feel like he just had scans done. He has been tilting his head to the left more so lately than normal. His doctor is a little concerned. He doesn't know if he's compensating for vision or balance or if something is going on inside his head. Hopefully the scans will be clear! James is doing well in pt. They make him work hard and are trying to help him be more independent. He's lost a little weight, which isn't surprising because I've noticed his appetite has slowed down. If he loses anymore weight they will put him back on his medicine. We are going to California on a fun family trip next week and the kids are so excited! We are going to give potty training another go once we get back. I pray that he can learn this and his body will be able to do it. He wants to be like his little sister and wear "big kid" underwear. I love my sweet boy and I just want life to be a little easier on him. He is the sweetest boy and loves everyone dearly!

Doing well!

Yesterday James had tubes put in his ears. He's doing great! He woke up happy and relaxed. He was back to his normal self as soon as we got home. He's doing really well in his therapies. He had speech this morning and he has met almost all his goals already. The only thing he still has trouble with is saying the "s" sound when it's at the beginning of a word. His therapist switched him to twice a month now instead of every week. If he keeps doing well then he will probably go to once a month. He goes into clinic next week and hopefully everything looks good. We've been talking about getting him in pre school in the fall but I'm afraid he won't be able to since he is still in diapers. He has absolutely no desire to be in underwear. He still doesn't have control over his bowel movements. Hopefully in the next month or so we can start trying to potty train him again. Other than that he's a very happy boy!

More surgery

James had an eye appointment this week. His vision in the right eye is getting better! But his eye won't close all the way so they want to put a little gold weight in his eyelid to help keep it closed. That won't happen till April cause the surgeon is very busy. We also went to his ent and immediately they said he needs tubes in both ears. He has tons of fluid and snot in his ears. His doctor said hopefully it will make him hear a little better. After this hopefully he will be done with any procedures. Other than that he's doing well. Getting stronger and talking better.