Friday was loaded with appointments and tests. We started the day at 8:15AM with Dr. A. He went over all of the test from Thursday in great detail. Ana has Neurogenic Bladder caused by myopathy from the disease. The plan for now is to 1. start a medication called Flomax, which her blood pressure may not tolerate; and 2. to make her go potty every 4 hours. This is a very short term plan as her bladder is over twice the size of a normal bladder and very "floppy" from the weakness. She is to have a renal ultrasound every 3 months and if her kidneys change any, or she starts having more "leaking", or she stops going on command every 4 hours, then we will start "straight Cathing" her.
Ana's second appointment for the day was an x-ray, which was uneventful.
Lastly, was her appointment with Dr. L. I must first say that Dr. L is by far the best doctor I have ever dealt with... he has such a passion for his work and for the children he treats, along with a high regard for the parents caring for them! Every doctor we have met at Cincinnati Children's has been absolutely delightful! Dr. L and his staff taught me how to care for the Malone stoma and how to access it for the enema. Along with Dr. A, Dr. L also wants to follow-up every 3 months. I am not sure about how this will happen, but I do know that God has always and will always make a way if it is His will. Please be in prayer about this with us. Pray especially for her Ana's kidneys... pray that they stay healthy and unaffected.
I still cannot find my camera, but I will update again before the weekend is over.