Long time

Well it's been a while since I've updated on James sorry. He had plastic surgery to put a gold weight in his eye which went well. His eye has healed nicely. Also he started growth hormones a couple weeks ago. I learned how to give that injection to him. He is due for his next set of scan next month. School is going really well. He's in a special needs preschool right now but his teacher said she thinks he will do just fine next year in a regular kindergarten class. He's still not potty trained that's something we are working on but aren't sure if he has control still. He loved the holidays and thankfully hasn't gotten any bugs that have been going around. Everything is going good. He's doing great and we are so proud of him and how far he's come.

Still healing

James had his eye surgery and everything went good. His eye is a little bit straighter! He is healing nicely and his doctor is very happy with how it looks. He also had a test done to see if his cortisol levels were ok and it turns out he has adrenal insufficiency so was put on medication. For those that don't know what that is, your adrenals are connected to your kidneys and they send cortisol to your pituitary glands when your sick or stressed to help your body but his isn't doing that. It's a lot more serious than I thought. His doctor told us he could go into shock if he doesn't take his medicine. He will be getting all his teeth fixed in a couple weeks. We also heard back from his oncology team and they got his scans from AZ and the "thickening" they thought that was abnormal isn't. It's been there for a while and hasn't grown or anything. So now as long as his oncologist is ok with it they want to put him on growth hormones. So we will see. He's still loving school and started PT again. He misses home(Arizona) a lot. We are going to try and visit soon but we will see.

Bad teeth

James got his glasses last week and he looks so cute. It's funny to see him now without glasses. He has his eye surgery next week. We saw his ophthalmologist and he said James' eye sight is improving but it will take some time for the right eye to adjust. We went and saw a dentist for James because he said his tooth hurt. Well he had a cleaning and check up yesterday. He has very bad teeth. He will have to have caps on all his teeth except the top and bottom front four. He will end up having to go the hospital and put under anesthesia to get all the work done. I feel like every time we get one thing figured out another thing turns up. We got the results from his stimulation test. James has a hormone deficiency and needs to be on growth hormones. The catch is the MRI he just had showed thickening and we don't know yet if that is normal or not so he can't take it. If he has cancer cells the growth hormones could possibly make them grow faster so we have to make absolutely sure he has none. Other than that he is doing well in school and loves playing at home. Hopefully his surgery goes well on Monday and his eye gets straightened out a bit.

Glasses

James has had a busy week. On Saturday he did his stimulation test for hormone growth. It took about 6 hours total. He did a really good job. We got the results back yesterday and he does have a hormone growth deficiency. So most likely he will be put on growth hormones to help him. We meet his doctor in a couple weeks to go over it. Yesterday he went to his new ophthalmologist(whom I love) he's a great doctor. I like him  much better than his old one. They did lots of checking on his eyes and said he needs glasses. His right eye was a -4.50, which is pretty bad. His left eye just has a stigmatism. We picked out some cool glasses.  He is also scheduled for surgery in three weeks to try and straighten it out. We were also referred to a plastic surgeon and saw him today. He wants to do  surgery a month after the eye straightening one. They will put a weight in his eyelid to help close it. We did confirm with radiology and they said it won't affect his MRI scans at all. So hopefully we can fix his eye so that he can see well and can close it now. I hate putting him through more surgery but eyes are pretty important. He is still doing school and loves it. He loves riding his bus and comes home and tells me all the fun things he did. So grateful for my sweet James!

NED

James had an MRI and the results were clear. They said that there was a spot of thickening on his brain that they didn't know if it was already there from last scan or if it was new. So they have to get his MRI scans from AZ. We met his new oncologist and she was very nice. She actually knew one of James' old doctors at PCH. He had a hearing test and it came back to no change which is good. He also had a echocardiogram and that was normal as well. He has he hormone growth test in two weeks. He's doing really well. He started school today and was so happy and excited. He loved it.

Growing?

James went to see an endocrinologist a couple weeks ago and they sent us to do some blood work and get a hand X-ray. We finally got the results back and his blood work showed his thyroid is working normal but his X-ray shows his bone are the age of a three and a half year old so he has some growing problems. They want his to do a 5 hour test in a couple weeks where they give him different medications and see how his pituitary gland does with them. Once he's finished that they will put him on a growth hormone to help him grow. He has an MRI next Friday and then he has a bunch of other tests a week from Monday. Since he's one year post radiation he has to have a bunch of different things done. He fell down some stairs the other day and scraped up his face really bad. He doesn't do well with stairs because his balance isn't very good still. He starts school in a week and is so excited! He's so excited to ride a school bus. Other than that he is doing great. He is having fun playing and being our sweet boy.

New doctors

We have been living in Utah for almost two weeks. Trying to get new doctors for James is quite difficult. His new oncology finally called me back and they have a bunch of stuff they need James to do. He has to get an MRI, spinal tap, and an echo. He sees the endocrinologist on Friday to see why he's not growing. Most likely he will have to take growth hormones. The only doctor we are having trouble with is his old ophthalmologist. The one in Mesa just won't call me back so I can get records to his new doctor. It's extremely frustrating! Other than that he's doing really good. He has fun and likes going to the park close to the house. We are trying to get things set up for school also and hopefully it all works out!

New hospital

Well my husband got a new job which is great but it's in Utah so we are moving. He starts on the 27th so it's pretty quick. We had a clinic visit this week. It was our last one with Dr. Li. I didn't think I would get so emotional but I started crying when I had to tell everyone. I have loved all of James' doctors and nurses so much. They have become like family to us. Dr. Li kept telling me that the hospital there is great and everything will be fine. I'm just scared they won't really care for James as much as the doctors here. James' counts are all great and he's getting really strong. We had to cancel his Endocrinologist appointment because we don't have insurance. We also will have to reschedule his eye surgery. I'm not excited to find all new specialist for him. We found a preschool for him to go to but we can't start the process till we get there. I'm excited for our families new journey. I will keep updating on the new clinic and everything.

Leg healed

On Wednesday we took James for a check up with his orthopedic doctor to check his right leg. The X-rays look really good. His leg is healed up nicely and won't need to be seen again, unless he breaks something. He had his preschool meeting this week and he will be able to get therapy through the school. He starts in August and is so excited to ride the bus! Clinic will be in two weeks and then he's due for another MRI at the end of July. If everything goes well he won't have to go to clinic every month just every other month. He's still not eating a ton. He's just never really hungry, I always have to just make him sit and eat. Hopefully he can get used to eating and he will gain some weight. My husband lost his job yesterday and that will definitely make all of James' medical needs a little more difficult. We have faith though that we will get something great and everything will be ok. James is still improving everyday and doing great.

Lost weight

James went to clinic this morning and everything looks great except one thing. His height and weight are not where they should be. He has lost weight and has only grown half an inch. He's supposed to grow 2" every year. So they put him back on Megace and said he needs to drink lots of pediasure. He's also seeing an Endrocronologist to make sure everything is the way it's supposed to be. He won't get to see that doctor till July though. He sees his orthopedic surgeon in two weeks to check his leg. Hopefully we gain get some meat on James and help him grow a little. He's doing really well other than that. All his doctors are very pleased and happy with how well he's doing.

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.

Port Removed

Monday afternoon I got a call saying they had an opening for James on Thursday to remove his port. It was all really fast we were expecting to wait a few weeks. Tuesday morning he went in and had his blood taken to check and make sure he was ok to have surgery. then Thursday we headed over to the hospital at 7am. It was a little bit of a crazy week trying to rearrange everything. His surgery went great. It took about 45 minutes and then he had to stay in the recovery room for half an hour. I tried to explain to him what the doctor was going to do. After surgery he kept asking where his port was. I think he was hoping to see it. It was the first time that he's come out of anesthesia calm and relaxed. He's usually grumpy and crying. He's doing really well and says he doesn't hurt at all. Everyone keeps asking if I'm excited the port is out and I am but I'm also not. I'm just scared that it will have to go back in. I just do t want him to have to have another surgery. This was his 8th surgery in 18 months. We took him off his appetite stimulant and he started to not want to eat and lost about 2 pounds so they put him back on. Hopefully he can learn to like to eat on his own. He's doing very well in all his therapy sessions. We've started having "learning time" at home to keep him up to date and busy. Other than that he has another eye appointment next week and hopefully it goes well!

Surgery

James has been doing great! He is getting stronger everyday. Last week he had another hearing test done. No changes his hearing loss is still the same as last time. His hearing aids help him a lot, especially in speech therapy. He is improving so much! He has had some fluid behind his right ear drum so he has to see an ENT or ear specialist. Hopefully they can figure out what's up and it will be a quick fix. He went into clinic today and everything looks great. He will be having surgery to remove his port in a few weeks. We don't know yet if he will have to stay in the hospital over night or not. When they put it in he was able to go home right after. We have been trying to re-potty train James this week. He does ok but we aren't sure if he can feel anything down there. His doctor said it is possible for him to lose sensation and hopefully over time it will come back. He just needs more time to heal from all the treatment. HIs hair is finally growing back slightly on the back of his head and around his ears. I can't believe it's taken 6 months to start growing again. James is such a sweet and loving boy! He's eager to help me with anything and loved playing with both his siblings. I very rarely have to get on to him. Hopefully he continues on this path and we never have to go back!

January Scans

This month has been pretty good for James despite starting it off in the hospital. He's started physical therapy again finally and man does she work him. After a 5 week break she makes him work as hard as he can. It was the first time where in the middle he said he was done and tired. Speech is going well he's improving a lot. He still needs some help but that's ok. OT is also going well. His therapist has had to set all new goals and make it a bit more challenging. James is walking like crazy and climbing up on things. We have started to try and teach James how to take his clothes off. Putting them on is very hard but taking them off is getting easier and next week he starts potty training again. He had his MRI last Friday and we found out today that he's NED(no evidence of disease). We are super happy and grateful that Heavenly Father has blessed our family. Next week we go to clinic and talk about surgery to remove his port. Tomorrow he goes back to his audiologist for a hearing test and to turn his hearing aids up. It's never really a slow dull week around here. If James doesn't have tons of appointments then someone else does. Thank you for all the love and support we are very grateful! We love our sweet boy!

Don't miss the hospital

James had been doing really well then we went to Utah and some family brought the flu with them and we all got it. James was the last one to get it and his was so bad they put him in the hospital. He had a fever and was just not doing too well. His blood counts dropped also trying to fight off the sickness he had to have a blood transfusion. They just kept him in the hospital over night. He's feeling a little better. He goes into clinic on Tuesday and hopefully his blood counts are ok. He also saw his orthopedic surgeon this week. His leg looks good hopefully he will be walking on it more.