Phew what a week!

Wow this week has been such a trying week. I know that God has walked with me through it all, but it hasn't been easy. The funeral for RJ was on tuesday and it was very sad but beautiful. I think it went better than we expected, God held each of us through this very sad day. Many family and friends were there in support and we are so thankful.
Wednesday Sam had an appointment with his immunologist. Now the last few times we had seen him we had each time discussed stopping the transfusions in march. I have been eagerly counting down the transfusions we have left. Well this week he said now that he wouldn't consider it until april or may, and that we would actually have to evaluate it then. So he isn't even really saying april or may, just that we will talk about it again then. I am so disappointed about this. I have just been praying and anxiously waiting for this part of Sam's life to hopefully be behind us. The immunologist is wonderful and I trust his judgement I am just disappointed.
Sophia is also sick. I actually ended up bringing her in to the doctor today as tylenol and motrin couldn't get her temp below 101.5 today. Poor little thing. She was pretty quiet and wasn't eating or nursing well. She doesn't eat well anyways:-) But wasn't nursing well. So we went to the doctor and the poor thing basically has red ears, red throat and inflammed sinuses. Nothing was like horribly infected, but the doctor was considered with her temp being that high even with medication. So we started antibiotics today, and did blood work which came back that she does have some type of infection going on. The antibiotic is already causing diarrhea, which is concerning as she isn't eating/drinking well anyways and now she will be stooling a lot too. Not to mention I am so nervous that she could get C.Diff like Sam had. She is more at risk than someone else just becuase of Sam's history. So please pray for her that she gets/feels better soon, and also that she doesn't get C.Diff. That is totally making me anxious.
These are some random pictures from this week and last, before Sophia got sick. Thanks again to all of you who have reached out to me and our family during this sad time.