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.