Today sucked we saw a different orthopedic doctor yesterday. They ended up resetting the fracture and put a cast on his leg. He had new bone growing back already so if they would of did this last week maybe it would of been healed by now. It’s a good thing he was sitting on my…

It has been a very busy week Tuesday he had his simulation under anesthesia. That went good. His leg is really bothering him it hurts just to move it. Wednesday he started radiation. The doctor told us it should stop hurting him soon. Thursday he had the bronchoscopy done. they did not see an air…

Today his EKG was good and his echocardiogram thank god. It was nice to get good news that his heart is good times like this we can take a big breath. We spoke with the adult pulmonologist IR doctor. He is going to do a procedure on Thursday where he will put a breathing tube…

Update from today CT chest scan. We can not catch a break they see a possible air leak in his chest. Monday we speak with the pulmonary IR doctor about what to do next. From what the surgeon said to us was the pulmonary IR doctor would put a camera down his throat to see…

Monday had another round of the trial medicine. It was a long day lots of blood draws. Tuesday we went back for more bloodwork. Still fighting the insurance company on the other chemo medication. The state can’t get involved because our insurance is through my husband union and is private. We are going to keep…

Monday he had another infusion that went well. He still feels like crap from the RSV. We will know by January 2nd if he can continue getting this trial medication. We are still fighting with the insurance company to approve the other chemo medication it has got to the point we filed a complaint with…

Our baby cannot catch a break spent the night in the ER he had a fever and cough. He has RSV they think he got it from the hospital.

Second infusion done he not feeling good he got sick on the way home. The EKG was good today. From looking at his bloodwork from today his immune system is down. We go back next week for another round of medicine. Scans at the end of December. If the tumor is stable meaning it doesn’t…

First infusion was done yesterday he did great. They had to give him a IV to give him the medicine and they drew blood from his chemo port. We were so proud of him. He did amazing with having to get the iv in his hand. He was scared but still let them do it…