Friday, September 18, 2015

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!

Wednesday, September 2, 2015

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.

Saturday, August 22, 2015

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.

Thursday, August 6, 2015

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!

Friday, July 17, 2015

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.

Friday, June 26, 2015

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.

Tuesday, June 9, 2015

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.