Update on Waverly

Here is the latest update on Waverly, for those of you who didn't receive my e-mail: I have been meaning to write this e-mail for a few weeks now, but I just haven't had the energy to do it. I wanted to share some new developments in Waverly's health. We recently received some more blood test results back from our neurologist. These particular tests took 3 months to come back to us. One that captured our attention was a white enzyme called galactocerebrosidase. Waverly's was very low and the lab suggested we have the test re-run to verify that it was an accurate result. When we looked into that particular enzyme and her abnormal MRI with some of our doctors, we discovered that it is linked with some serious neuro-muscular diseases in the dystrophy family that can be fatal. Since then we have been frantically trying to figure out the best course of action to take. Everyone we have spoken to has encouraged us to take Waverly to a Children's Hospital in the US for further testing and diagnosis. We contacted CHoP (Children's Hospital of Philadelphia) and I am working on getting an appointment, but the earliest I can get, thus far, is the end of March. The pediatric neurologist they want us to see specializes in this particular area. We took Waverly to a lab here in London yesterday for all of the blood tests to be done again. A big frustration is no one at the lab can tell us how long until we receive the results. I cannot understand why this is such a difficult question, but no one is familiar with this particular enzyme and it isn't in any of their books. I am hounding them for a answer - I need to know how long I am going to have to sit here and wait and worry. We already had planned in be in PA the second half of March for a visit and doctor visits. We will most likely be extending our time in the US to visit and work with the doctors at CHoP. I am hoping to get our appointment moved up, in which case the kids and I will fly home sooner. All this to say that we are incredibly stressed and worried about the outcome. This has been a very long process already and the wait is unbearable. I am writing this e-mail to all of you to let you know about what we are dealing with and to ask for your prayers. This is such a difficult situation to deal with, especially when we are so far away from all of you. We also have to factor Oliver's health into all of this. He is scheduled for an MRI on 14/2. We are praying that his MRI is normal. We are still waiting for the lab to let us know how long of a wait we have before us. I am really hoping it is not 3 months, like the last time. The embassy medical unit is working to try to get this answer for us as well. They understand how anxious we are and how potentially serious this is for us. Waverly started attending a nursery school every morning. She loves going and being with the other kids. She is still making gains developmentally speaking in a some areas, but in many she has plateaued and doesn't seem to be progressing. She has such a sweet, sweet spirit. Please feel free to forward this e-mail on to other people who may know Matt and I. We could use all of the support we can get at this point. Matt and I feel fairly helpless at the moment. We are angry that this is happening to our little girl - it just doesn't seem fair to her