The latest....

I have known for a long time that patience was one of my weakest gifts, even though people would disagree with me on that. I know I am put on the patience list because it seems like everytime I turn around I am learning how to have more. Although different now because through the process I take time to listen and grow. So, as I grow I take you along with me.

I talked with Kasi's cardiologist today, Dr. Malcolm, and are going to work together and see what we can do to get questions answered for Kasi. He has sent things to U of M before as you know and we were denied. Now we are taking a little different approach. We heard from UPMC that they would not take her case because if they even see one child with something similar, it is not the same, and the similar ones they send to U of M. All of that to say, Dr. Malcolm's office has sent everything up to Dr. Stanley once again with a message to call me directly. We are hoping that hearing from a mom's heart might mean he would see her or give us other resources to draw from.
Also at this time we are waiting to hear back from Dr. Neirotti, who has requested to speak to Dr. Malcolm on the phone instead of email. He has been contacting all of his Dr. friends from around the world and seeing if he can get some insight. Kasi's case is so incrediably rare, if there was a percentage that I could give you of people in the world that have something like her I would, but there is not. She is one of a kind. She has been since birth. Dr. Neirotti is very passionate about her case and it is amazing that he is putting so much into this when he is retired and living in Argentina.
As for our family. We are asking for wisdom for all involved. Dr. Neirotti is the best of the best in the world, but there is One greater and that is our Father. He is the Greatest Physician in the universe. We are looking for man made fixes and we know that God can reach out and touch her body Himself. Whatever road he takes us down we will rejoice and be glad in. His grace is more than enough for each day. We continue to put one foot in front of the other knowing that He gives light to each step, and not to the whole journey.
These last few days I have really taken and step back and just really listened and observed my dear Kasi. I have watched as people have stepped up to try and "get things done" on her behalf and then read what some have sent into TV stations too. I realize that Kasi, through her smile and the kindness she shows, is an example of God's amazing love for her. I am jealous of her in ways. Let me ask you, if you know her have you ever seen her not smiling? Would you ever guess she was in pain? Would you know that her body is fighting for survival? I hope you all understand that when we talk about risks in surgery it is not a risk of success, it is risk of survival. Kasi is surviving! Her body has compensated for it's uniqueness. God has provided every breath for everyday. You have no idea how much I love Him because of His love for her. It goes beyond His gift of Salvation and on to His gift of blessings for each day. None of which are deserved by us, but given because of His emense love for us. If you ever doubt He is real I would love to take out my heart and give it to you, even if for a moment and you would know.
As we go on from here we will keeping looking for answers. We will praise Him who "began a good work in us and WILL continue it out until completion".
I will leave you with this thought for the day, week, or until the next post. (hopefully not long b/c the phone rings and I will have something to update!)
Kasi's life verse. She was given this by her 1st grade teacher and she holds onto this.

Psalm 73:26
My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.

We love you Kasi, and you truely are a gift to all of those who know you.....

Speaking the name of Jesus boldly with all of you,
Jodi

Also, we are setting up an appointment with her Nephrologist again to make sure her kidneys are still doing okay. Her Dr., who once agian was one of the best around and started the pediatric kidney transplant program here in GR, was let go because of "politics" at the hospital. We are going to see a different Dr. in the same office, but as soon as Dr. Bunchman goes somewhere else, we will hopefully be able to keep up with him. He knows her case!

UPMC

Well, it has been a bit again since the last post, so I thought I would give you an update although it is not a very big update. What I can say is that God is working, and His work is amazing. Currently we are waiting to hear back from Dr. Nierotti, who is in Argentina, and Dr. Morell who is from Children's Hospital, University of Phittsburg Medical Center. This Children's Hospital is one of the best in the nation and we are praying for some direction from them.
Now on to how Kasi is doing with all of this. She was "ok" with the decision of UofM, but she is really tired of having restrictions. She is ready to be able to do things again and she is ready to not be in pain in her feet. It is becoming a "normal" to her which is kind of sad. I really don't like to hear about her pain being normal, because it is not. And it is not something a child of 14 should have to live with. She is a tooper though, you wouldn't even know that she has pain. She is really at rest with this, and I can only say it is because it is bigger than us. We are all have a sense of peace, but it is ONLY because we know our God is bigger. That doesn't mean that we are worry free because that wouldn't be human, we just know that we HAVE to put our trust in the One who is the greater, bigger, and healer of us all. We know that He has given wisdom to those who need it and we are trusting that we will find those people. This UPMC thing is totally of God and our connection to this place was only from Him! I am so excited to see what God has in store resting in His will, because His will is perfect!
Please pray for wisdom, and healing for Kasi. And of course continued peace.
In Christ Love,
Jodi