Sunday, July 24, 2011

MRI results

So we got the MRI results back and there was some good news and some not so good news. The good news is there are no longer any cysts anywhere in his brain. But the not so good news, his lateral two ventricals are looking larger than normal. His neurologist thinks this could be for 1 of 2 reasons: 1. They are swelling from too much fluid, in which case they would probably need to put a shunt in to help drain the fluid or 2. He brain is developing abnormally and they just look larger but that's just how his brain is. We have to see a neurosurgeon in a couple weeks to do more testing and determine what is actually going on. His neurologist does not think its emergent but he does need to be seen soon. And some more not good news, his pituitary gland is still abnormally small. His neurologist was hoping it would grow or change somehow from his first MRI but there has not been any change. She ordered some labs to be drawn and depending on the results we will have to see an endocrinologist as well. Just two more specialists to add to his list of doctors.
We will now more in the next couple of weeks and I will try and update as often as possible.
Also, I need to ask for prayers for our family right now. We are going through a pretty stressful time (for reasons I will talk about another time) and we need all the prayers we can get. Thanks so much for all the support!!

Friday, July 15, 2011

So Nick had his follow up MRI today and he did good. They had to sedate him with gas and intubate him so he's a little hoarse sounding and a little groggy but he's pretty much back to himself already.
His therapies (PT, OT, vision) are going well and he can almost hold his head up completely by himself but never for very long because he gets tired quickly. We try and do a lot of tummy time but his OT thinks he has low muscle tone in some of his neck muscles so he will continually have to work against that to get his body to do what he wants.
I am somewhat worried about his feet, they are pretty small and seem to grow very slowly. His neurologist mentioned he might have an abnormal pituitary gland which could cause hormonal problems, we will know more next week.
I can't believe he will be one next month! Time goes by way too fast!