The skinny

(not me - yet! I mean here's the low-down, the scoop!!)

Where to start! Emma was on 0.5 liters of air per minute today and should be weaned completely tomorrow. She was on 35ml of feeds today, increasing by 5ml every 12 hours if she continues to tolerate it.

The nurse who is with her tonight called to request her crib so she can get used to a real bed, though it will be a big crib so she'll likely look a little lost in it! We can put her in the swing then!

The genetics doctor came by today, briefly! Emma's micro-array came back normal which means they found no abnormal chromosomes for 1000 mutations they know about. This is great. And likely means her conditions were not inherited from us.

Then a neurology neonatologist stopped by. Apparently her moebius syndrome could be caused by a genetic mutation (many genes make up one chromosome). That could possibly be inherited. There is a doctor in Boston doing more research on Moebius and the doc is going to let her know about Emma to see if she thinks it is Moebius and if she can do a blood test to identify the genetic mutation. (If there is no gene mutation it may not be Moebius.)

Clearly, despite my vast medical background (!!) we are a little out of our depth of understanding all of this, however we have asked many questions that I simply can't type all of the info we have for you!! We do know that there is no treatment that they can give her, besides the speech, occupational and physical therapy she has been getting - for now. This will be done by early intervention once she is discharged. When she is older the neuropthamologists will look at helping her eyes. (She does not move them side to side and also has some cross-eye action.)

At this point there is not a procedure to help her smile as she does not have the nerves. If she had nerves that were damaged, they could work on them. She simply doesn't have them - that they could find in the MRI. (That's pretty conclusive.) However smiling is not essential, however much it seems to be!

So, once she is off the air and up to feed level (and the IV removed) she needs to show weight gain from the milk alone, and also be able to keep her airway open as she has been. These are the next goals, and if you will join with us to pray for continued progress we thank you VERY MUCH!!