Home

The next two weeks consisted of us getting in our new routine as a family. We were able to play with friends, and go outside as long as it wasn’t windy. We were enjoying life and looking forward to moving into our new house in a little over a month. We had a follow up with Dr. Marsden one week after we got home. He just talked to us for like 30 minutes about how we are all going to be working together and learning together. Tanner had a blood draw the first Monday home. This is when his numbers (inflammation and WBC) started to rise and his anemic was still low (after T’s surgery he was really low on blood. We don’t want to give him a transfusion or iron because we’re on the path to do a bone marrow transplant and also because of his disease. If we were to give him iron or a transfusion while he had an infection, it’s possible that the infection will feed off the new health stuff and grow and not get better). Because his numbers where the way they were, Dr. Chen and infectious disease wanted us to see Dr. Marsden on the following day. Dr. Marsden was great to get us in, even on his lunch. He looked over T and called the other doctors to inform them on how he looked and acted. They decided that we could just keep him home and keep a close eye on him. The next week his numbers went up again and his blood count dropped. Dr. Marsden and Dr. Chen talked and felt it was best for T to go back to PCMC and be evaluated again.

Sister loves to watch Shows with you.

Happy Sunday with out Daddy

5.22.2016 Just an update on this Sweet Boy! He is doing great at home. And we are loving being home although We are busy with him and all his medications and trying to keep everything clean and spending time with C and one another. Before we left the hospital, the wonderful team of Doctors sat with us and gave us guidance on how to help our sweet little man and keep him healthy. One thing they di...d say and they had to keep reminding us is that he CAN FIGHT off viral infections, just not bacterial and fungal stuff. He is on daily antibiotics to help him fight infections. One thing they did say is don't live in a bubble but also take more precautions then normal. There is no black and white but a lot of grey guidance and how we feel as parents about what we do or don't do. We have been approved for immune boost shots and our transplant. So now we just need to get training on how to give him shots and the meds, along with finding a donor. Transplant is still probably over a year away. Just cause we want him to be a little old and healthy as possible. We have a couple doctors appointments this week and then our follow up with our Primary Children's team to make sure everything is going good next Tuesday. #Home #Tmantough #toughliketanner #jolleyfamily2016