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.

Ear problems

James went to have a hearing test on Thursday. He did one test and it came back abnormal. The audiologist looked in his ears and said he had fluid in both ears and that he couldn't continue the hearing test till he saw his pediatrician. We took him to see his doctor later and she said that he has an infection in both ears and his left ear drum has burst. Poor boy! He has a high tolerance for pain and never says when he hurts. So they put him on some antibiotics and special drops for the left ear. She didn't mention anything about putting tubes in. His hearing is pretty bad and his hearing aids don't help at all. Hopefully he can feel better soon. Good news though he's gained 5 pounds since September. his leg is slowly getting better. He sees his orthopedic surgeon in a week to check and see where he's at. He's very excited about Christmas and is enjoying spending time with family. Merry Christmas!

Gaining weight

James went to clinic yesterday, everything looks good! Doctors are very pleased with how everything is going. He is scheduled for his next MRI at the end of January. If everything looks good then James will get his port out in February. James weighs a nice 37.5 pounds! This time last year he barely weighed 30 pounds maybe. It's nice to see some weight on him, it makes me so happy! He's eating really well. His hair is still coming in nicely. It is very thin and fine but hopefully over time it will go back to semi-normal. He loves playing with his sister and helping his parents with anything he can. He had his last pt of the year yesterday. He will start again in January. Hopefully by then his leg will be a little better and he won't be so scared to walk on it. James loves going to speech! It's sometimes challenging for him since half his mouth doesn't move but he tried really hard. Other than that everything is still going well! He has a hearing test next week just to check everything. Thank you everyone for your love, support, and prayers. We are very grateful!

Cast off

Yesterday James had many visits to different doctors. One of them was his orthopedic surgeon. They took his cast off and took some X-rays. His leg is healing nicely, not 100% better but it's getting there. The bone is still slightly broken. They were going to put him in a cast for two more weeks but after finding out he can't run and just learned to walk again they said nevermind. He's just supposed to be very careful and take it easy for a few weeks. They said it could take up to 4 months before its back to normal. James is very happy to have it off but pretty nervous to even stand on it.
James also saw his eye specialist yesterday. His right eye is getting better. The doctor said he doesn't think he will need glasses. He has to wear an eye patch for 2 hours a day on the good eye and ointment in the right every night. He is finally used to his "ears" or hearing aids. He even asks us to put them in. He has another hearing test in two weeks. His therapies are going pretty good. He's getting more frustrated lately with OT. He just gets into the mind set that he can't do things. Poor guy! I try and remind him that he can do it and it's ok if he needs help. Other than doctors and therapists he loves playing with his sister and brother. He loves going to the aquarium and seeing all the fish. He is very excited for Santa to bring him snow. He has his next MRI in a month. I pray everyday that his cancer will remain gone!