Okay, I still dont have the medicine for Riley yet but Ill go ahead and let yall know what is going on. Riley went to see Dr. Parks last last week and Dr. Parks confirmed to us that Riley has a metabolic disease. He has an enzyme deficiency, not sure which enzyme yet but they will be running some blood work to see which one it is or if he possibly has both. Were waiting to hear back from some doctors as far as Philadelphia to let us know which blood tests we should run to figure out these enzyme deficiencies. Once we hear back from those we will run that necessary bloodwork, wait for the results, and know which disease he has. He might have to be on a specific diet the rest of his life but that is good news! I dont have the names of the diseases yet but I do know that one of them requires a no protein diet the other is in amino acids diet. It is possible he has one or both of these. Im excited about the good news and praying vigorously that once Riley is getting the nutrients that he needs and on the strict diet things will start happening and things will seem more normal. Riley has also had appointments with babies cant wait. Until we hear from a Dr. Riley is on this medicine that its going to be a supplemental drug. Hoping itll start balancing out what his body is either making too much of or not making it all. Starting this week Riley will see a developmental therapist, a speech therapist, and a physical therapist. All of these will also aid in Riley being able to do more normal activities. My heart longs for the day that I see my boy smile at me and or laugh. And you all know I really want to hear him tell me one day how much he loves me (the bestest)😉. Thank you all so much for all the prayers that you have been lifting up with us and on our behalf. You will never understand the gratitude I have in my heart for all of you. Please continue to pray for our family, we received heartbreaking news this weekend. pray for protection and guidance for the year that lays ahead of us. Thank you all, I love you!
Posted on: Tue, 18 Nov 2014 00:48:08 +0000