Over due

Sorry it has been months since I've written about James. He's doing alright. He had an MRI and it showed some thickness that keeps growing. They said it's not a tumor but they don't know what it is. So they sent the scans to his radiation oncologist in Houston but I found out they sent it to the wrong Doctor so we are still waiting. Hopefully we find out soon because I've been waiting two months to find out. He's still growing really well. He's been on a break from PT for a bit but we will probably start that up again. He starts kindergarten in a few weeks and is so excited. He thrives on a schedule and isn't really sure what to do without one. He's on thyroid medication now also which his doctor said isn't a surprise. Other than that he's doing well and we've enjoyed our summer!

Progress

James has been doing really well. He went and saw the endocrinologist a couple weeks ago and the doctor told us that he has grown 3/4 of an inch. Which is great and means the growth hormones are working. He upped his dosage a little bit. The only bad news was James' recent blood work now shows he has hypothyroidism so he takes medication for that now also. The doctor said it's pretty common for kids like James to have all of these different issues because they are all controlled by his pituitary gland which was damaged from treatment. It was nice though we knew he grew a little because all of a sudden his shoes were too small. He goes in to see his ophthalmologist next week and also his pediatrician for check ups. School is going great. We had an IEP meeting with everyone who works with James. He will not need to be in a special need kindergarten class next year because he is doing great. Obviously he does have some things still he needs help with that OT and PT are working on with him. He loves going to school and being with his friends. All his teachers just kept telling me how amazing and sweet James is(I already knew that)! He stopped doing physical therapy at the clinic just for a couple months and will restart in July. We got a letter in the mail yesterday saying it's time for us to schedule his next MRI. I feel like they come so fast. It always makes me anxious and worried but hopefully things will continue to be good for our sweet boy. He is just doing so well and it makes his whole family happy. We will try to keep you posted on results from all the different doctors.

MRI

Well it's that time again. A couple of weeks ago James had his MRI checkup. To say it didn't go well is putting it lightly. Here in Utah they don't do general anesthesia on children for MRI's unless they absolutely have to. Well last time he had an MRI done here they barely got everything they needed because they just gave him some medication to help "relax" him. I told them not to do that again because he screamed and cried through the whole beginning of the MRI. Did they listen? Nope! They did it again this time and surprise surprise we couldn't get James to relax and then they barely got what they needed from his brain but no spine. I was so mad! It's no fun to watch your child sit there and scream and cry for his mommy. And then the nurse tell me they can't get all his scans. So today we went and had them finished and they put him under general anesthesia. We haven't heard back yet what the results of his spine images are but we know his brain is all clear and no signs of cancer. They said most likely the spine is clear as well so that is good news! James is doing really well in school and enjoys it so much. He's still doing PT weekly and some days are harder than others for him. She works his balance problems a lot and when she tries something new and challenges him he struggles and cries. Other than that everything is the same and going well!

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!