This is the day that the Lord has made, we will be rejoice and be glad in it.
Let’s go Team!! I received a phone call from UPMC(Pittsburgh Children’s Hospital of Pittsburgh) yesterday. We got a date for the upcoming evaluation. We will be headed to Pittsburgh in March. I have so many positive things to report.
We qualify for Miracle Flights which is an organization/company that provides flights at no cost to the patient and parents of a child that is traveling for medical appointments. They also told me that if we had not qualified based on income, we would qualify because Damon is a Veteran. They try to accomodate military families as a way of saying thank you for your service. I had no idea this organization existed until my good friend Karly Bignotti-Cooks. I am so grateful to have people in my life that help take the load off of such a tough time.
Our plan is to stay at RMH near the hospital. They are all individual apartments so it’s convenient right now during this pandemic. We can have our own private space. Purchase our own food etc…I always find a store whenever we travel to get cleaning products(even before the pandemic). Lysol, air fresheners, clorox wipes, disinfectants!! The room and the beds will be disinfected wherever my family lays their heads. I know that was way off of the topic but it’s true. Is it just me or do other people do this too?
Today Kendall has started asking questions for the first time about why we are going to Pittsburgh, why does she have to see another heart doctor when she already has one, why we have to travel to another state etc….I explained to her as best I could on a very superficial level, not too much information because I definitely want this conversation to be with professionals who can explain it to her on a 12 year old level. So I contacted the transplant team at Children’s Hospital in Detroit so we can set up some sessions for these conversations.
Thank you Deb Young for always being my sounding board and voice of reason because you have been there. I appreciate and love you so much!!
It’s amazing that we kept wondering when this evaluation was going to take place. Almost antsy because we were told she needed a transplant months ago but I refused to rush the process and call everyday and ask what’s going on. Now that the call was made to us and appointments have been set, it feels surreal. Like ok it’s starting. The process is in motion. Our lives are about to change for real for real. I am so excited for the day she will say she feels better, breathes easier, is less tired and has more energy. She doesn’t even realize that she will be able to do things easier and with less effort because all that she knows is how she has been feeling for 12 years. This is normal to her. I’m teary right now just thinking about it but it is going to be the best day ever to witness her brand new firsts without being short of breath and having to stop to take breaks. Words cannot explain the joy, love, hope and excitement we feel.
It has been a long journey as you know because it has been your journey too. Thank you for hanging in there with us, praying for us, and any acts of kindness you have shown to make this journey more bearable.
Continue to keep Kendall and our family in your prayers. She has come so far, beat so many setbacks and obstacles. The story continues……
Love you all
Cewanda
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