Picking up the Pieces

I am sorry to wait so long to post. I know that we have many wonderful people checking in on Miss K. Truth is that we really don't have much more info than we did before.

Today she finished her 6th dose of IV steroids. For the first time ever.....she wanted to come home. Normally, she cries when its time to leave her friends at the hospital. She was ready to get back and play with her brothers.

Kaidence is physically doing well. She has been pretty tired the last 2 days but cardio seems to think that the rejection may be catching up to her. Tonight, being home with her brothers seemed to lift her spirit and level of energy. She even ate a good dinner (Thanks to one of my MANY wonderful friends). In 2 weeks we will try to get back to her normal activities and let her live as normal of a life that we safely can.

We bumped her echo up a day earlier because of the fatigue. Her echo still looks great. When people have Coronary Artery Disease certain parts or walls of the heart don't have good movement but Kaidence's are moving well. Her heart just hasn't gotten the memo yet as to how sick her arteries are. I pray it stays that way!

The shock is still so raw but things are starting to set in a little more. We have talked with Kaidence and she will help us make the decision on whether or not we list her for a new heart. She knows that either way we will be ok. Now some may think that you cannot let a little 4 year old help make this decision BUT Kaidence is different. This little girls understanding in some areas is far beyond mine. She knows her heart is sick but she doesn't feel sorry for herself. She lives her life to the fullest. She is so happy despite all she goes through. Over the years we have talked about death when she has brought it up. She tells me what she thinks heaven will be like. When letting her know the other day that she could help us choose what we should do she said that when her heart got sick that she wanted to and be with Jesus. I told her ok and then we talked some more about what she thinks heaven will be like and who will be waiting for her. I don't ever want her to feel like she cannot move on because of how sad we will be. However, the next day she woke up out of bed and one of the first things out of that little girls mouth is "I want to get a new heart".

So as of now and if or when the time comes we will re-list her for a heart. She may change her mind and that is ok too. If she wants to fight to live, who am I to tell her she can't? I don't know what Heavenly Father has planned for my baby girl. I hope and pray that if she has to leave us for this time that it will be in a peaceful way and time. I don't want her to get that sick again. This little girl knows she is loved and treasured. Her spirit is precious. She has no idea of how many hearts and lives she has touched but one day she will know.

The boys are hanging in there as well. I have such amazing boys. I am so proud of them. We are trying to be honest as to what could happen but focus on the now while still keeping that communication open for them to express themselves. I don't want them to be afraid to talk to us or ask us questions. Kids are smart and they need honesty on their level.

Monday we will have another echo. If ANY changes are detected they will re-list Kaidence. Her next heart cath will be on October 27th. I hope and pray that somehow and someway this disease will no longer be or that it will lessen in severity and she can be safe. It shouldn't happen but I know it can happen, I just don't know if its part of Heavenly Fathers plan for her.

I want to thank you for the love and kindness you have shown. Your prayers are lifting me out of the torment that has had my heart for the last few days. I ask that you also please pray for her wonderful medical team. I pray that they will be in tune to promptings even if they may not understand the reasoning. Your prayers for our family are the greatest thing we could be given at time. Mike and I are still trying to figure it all out.

"Be not afraid, only believe" Mark 5:36 If Kaidence isn't afraid, why should I be?