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.