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She's so small. That was my first thought when I first saw Marian, like a miniature porcelain doll. At Marian's early well baby visits her weight gain left something to be desired. It took her several weeks to hit 7 pounds and at Thanksgiving, when she was three months old, she only weighed 8 pounds. Marian on Thanksgiving weekend, weighing in at 8 lbs At Marian's 6 month visit she wasn't sitting up. The doctor pulled her from laying down to sitting and her head lag was appro

Some adorable and dearly loved friends, not from The Hunger Games. The title of this post is from The Hunger Games, I read all three books and saw three of the four movies. You have to draw the line somewhere and I just could not see the last movie. Phillip Seymour Hoffman wasn't even alive anymore when they filmed it for goodness sakes. In The Hunger Games, that line is said as a little cruel punch in the gut to the people whose fate hangs in the balance. Including those who

Yesterday we got some great news. Marian has an appointment April 7 with an NPC expert in Chicago who has accepted her as a patient, given her a rush appointment, AND can begin administering the treatment if it's not ready in California yet. Our local hospital is hard at work trying to get the treatment approved here so we will not have to travel back and forth to Chicago; however, to know that it will be accessible is an enormous relief. I've really been struggling with the

Emily and Marian, ages 3 and 6 months All I ever wanted was to be a mom. When I was little, when people asked how many kids I wanted, my answer 13. Naturally, mostly girls. I had names picked out and probably took pretend play a step too far pretending my dolls were my actual babies, strapping them to my body with a make shift chinese jump rope baby carrier, proudly strolling through public places, excitedly whispering to my mom, "do you think people think this is a real baby

Well, I must admit, I always kind of wanted a blog, but I never really had anything to say. Not to be confused with not having opinions - which I certainly have no shortage of. I always preferred to live my life privately. Now, unfortunately, I do have something to publicly say, which is this: we need to save our daughter's life. She is 18 months old. And it is freaking stressful. A couple days before Marian's Niemann-Pick Type C diagnosis there was this massive double rainbo