Yesterday was really nice. Hope had a bunch of visitors and she loved every minute of the time she spent with her visitors. Beth was here for a class and was able to come to the hospital to see Hope. It was their first meeting and I know Hope loved seeing her Aunt Beth. My brother also came to visit and mom, Marilyn, and her family all got to see Hope at the Clinic.
Hope spent all morning getting tested. The doctors repeated all of the tests that were done in Akron and not much has changed. Her head and spine look normal. Her heart and kidneys looks the same as they did in Akron. Now we just play a waiting game to see if the doctors at the Clinic are willing to do the surgery. We have been praying like crazy that they will be willing to let Hope show them how strong she is.
There was some talk about intubating her, but that hasn't happened and we are hoping that it won't have to happen until closer to surgery. We do know that eventually she will have to be intubated so that they can control the oxygen levels better, but we don't want that to happen until we know for sure she is having surgery. We don't want to put her through anything that invasive if they don't think she will be a candidate for surgery. She has already been through enough and the thought of having her on a breathing machine scares me. I have heard bad stories about how hard it is to get kids off a breathing machine once it has been started.
Please join us on September 20, 2014 at Wade Oval or sponsor our team...Hope's Heart Warriors!
Can I count the times I've watched you smile and wondered what will be? Can I think of each and every trial we've endured patiently? So very many sleepless nights, the monitors watched with care, blood pressure low, heart rate too high, knees bent down in prayer. I know Lord you are near to me, this journey's in your hands, But sometimes Lord it is so hard to meet this life's demands. I trust you God, I really do but fear creeps deep inside, sometimes I just don't understand, no matter how I try. But Jesus you are with me, and hand in hand we'll cope, for I know that you will lead us, through this heart journey of hope.