Metabolic appointment

We met with Dr. Wang today up at CHOC to discuss Lyla's diagnosis. Long story short, at this time, nobody can tell us what is wrong with her. We have a list of symptoms, but nothing to explain it. The team of Metabolic doctors ran all their lab tests, which gave negative results, which is good, but it didn't lead us any nearer to a diagnosis. It was pretty much what I expected today. I think Mike walked away a little more disappointed that they weren't going to do anything else, but I wasn't. The next step as far as Metabolics is concerned is testing for Mitochondrial disorders, which would mean a muscle biopsy. Dr. Wang suggested that we wait until the next MRI in about 6 months, and see how she progresses to decide if we want to go down that path. Even then, mitochondrial disorders are not treatable or curable, really, so all it would do would be to give us a name to her underlying condition, and MAYBE give us an idea of what her future would hold. I can't say that I really feel anything from this appointment, not disappointment, not encouragement. I expected it, and am just moving on. I think Mike would like to do the test and just move a little faster towards figuring things out. I agree to some point, but also think that she needs time to show us what she is capable of, or rather whether or not she can make the progress she needs to. She will be starting a few different kinds of therapy, physical and occupational to assist in her progression. So, hopefully those things will help. For now we just wait and see what Lyla will do, and try to just enjoy her for who she is. Her smiles just melt the heartache away, so we are grateful for those! We are continually grateful, and feel so blessed, for all of the support that we have been given by our ward, family, and friends. Truly, they have sustained us through our hardest of days. We are grateful beyond words.