Porter has had a week this week starting with an MRI to check the fluid level in his head and check the swelling of tic nerve.    He has been having some rapid eye movement side to side and when they dilated his eyes they noticed his optic nerve was a little swollen. The MRI didnt show any extra swelling or fluid increase from the last MRI he had so that was good to hear.  We will continue to monitor him when we get back to NC.  Porter’s growth has taken off in the last couple of weeks, so much so that nutritionist decided to go down on the calorie content of his formula. He was shooting up on the curve a little faster than they wanted.  His hair is also really coming in.

He is continuing to make progress with the vent wean although there seems to be some inconsistency with the teams plan on this.  A new team of docs means new teachings (from us) about Porter and his history.  Porter spent about 8hrs off the vent yesterday and is doing it again today.  They have a speaking valve in place while he is on the vent which has allowed him to start making some noises which is so cool.   We’re also working with him on using a different speaking valve off the vent.  All of this is strengthening his lungs.

Porter is getting stronger and stronger and has been able to sit up on his own for almost an entire minute.  He is off sternal precautions now so we can really start working on his strength.