A Diagnosis and Life

Here we are on the other side of Christmas and I can't believe I haven't posted a blog in over two weeks. So much has happened. On December 18th we went to a Craniofacial Panel assessment appointment. Christopher was seen by a nurse, speech/pathologist, nutritionist, social worker and geneticist. They gave us good advice for his feedings and general health (he's a healthy baby). Then the geneticist talked to us about Moebius Syndrome. It's the direction we're going now, because his face has issues with the 6th and 7th nerve (eye and mouth area) and he has clubfeet, all arrows point to Moebius. It's a hard diagnosis to digest but it could be much worse. We are very fortunate that the left side of his face is the only side affected because many cases have both sides affected. I think the hardest thing really to deal with right now are his feet. They are looking sooo good, but right now he has to wear a Mitchell Brace. It's two little strappy shoes hooked onto a bar to keep his feet at a specific angle. He has to wear it right now 23 hours a day. I call it his baby snowboard and we have decided he will be a professional snowboarder someday. :) He doesn't seem to mind it so far and in the future he won't even remember it I suppose. It's just crazy to hold your snuggly little baby with a hard metal brace all the time.

Kate and Erin are so amazing and beautiful. They are so patient with Josh and I who find ourselves cranky and short tempered with life. The good thing is we snap at each other but can laugh about it. I guess that's good. At least there is still laughing, right? :) We're at the point now that we tell ourselves it could be much worse and we are lucky to have this sweet little boy. Isn't he cute?