Well, I have been feeling better about things over the past few days and Mike is coming home today from his business trip so that is great. So thank you for your prayers, but please keep them coming. Kaidence has been doing great. She is trying to move around more and I think that she is getting frustrated with not being able to get around as she would like. We are working on that and therapy is coming today. She has started getting "stranger danger" and does not like people to wear hats around her at all. This all started in the PICU from all of her surgeries and the scrub downs they would do of Kaidence's VAD cannula sites. Sometimes she was still awake for it and they always wore the blue surgical hats for it. Kaidence does not want anyone to feed her. She thinks she will do it herself. Therefore, I don't think she eats much at all, but Kirby our doggy sure eats well thanks to Kaidence. She is still tube feed a lot but that is slowly getting better. Yesterday was cardiology and to tell you the truth I did NOT want to go. Sometimes you just don't want to be reminded of everything when you are trying to move on and be normal. Anyhow, I did get a little down after her appointment, but feel better today. Her echo looked the same, not better and not any worse. Her ANC is at the moment in "normal" range and so they are slowly starting her back on one of her immunosuppresives. We will watch closely to see if it causes her ANC to fall again. The doctors are meeting today to try to figure out what happened with the biopsy and how. So many people live with this regurgitation problem but Kaidence's happens to be worse and has a high possibility of continue getting worse as the years go on and more heart cath's take place. Intervention will all depend on Kaidence's body response to what is happening. She may handle it just fine or she may have issues that lead to surgery or needing a new heart sooner than we wanted. I can't make things go away or get better and I know that things could always be worse. We will just pray that Kaidence's is happy and as healthy as the Lord wants her to be. I don't have time to waste on worries that I can't fix. I need to enjoy and embrace every moment that I do have with my children. My life will be happy because I am choosing to make it happy.
3 hours ago