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One day at a time

posted Jul 17, 2013, 1:34 PM by Melissa Burke   [ updated Jul 18, 2013, 9:40 AM ]
So everyone keeps telling me to take things one day at a time. I know that is the right approach but somehow I am finding it really hard not to project out to the future. James and I talk about skipping ahead 2, 5, 10 years from now to have certainty about Peter and our whole family. It's ridiculous to hope for such a thing, but I find myself waking up every morning and hoping that this is just some bad nightmare that is coming to an end...hoping we are out into the future and everyone is ok. But the truth is, we don't have that luxury. We need to think about making it through one day at a time. I'll just keep repeating that mantra and hopefully it will stick. For now, let me share with you the last few days.

So today has been great so far. Peter went through surgery for his g-tube and circumcision like a champ. The surgeon said everything went great and now he is resting comfortably. 

Peter post surgery - a little groggy but doing well

Yesterday, Peter did great but his parents had a little more troubling day. We sat down with another Duke neurologist to review the latest findings of his last MRI. Unfortunately, the news was not what we were hoping for. Most of the time was spent reviewing the day 8 MRI findings vs the most recent one, but she said they now see severe damage to Peter's brain in the thalamus, basal ganglia and posterior limb regions. Damage to that degree can have severe negative consequences on his long term prognosis. So admittedly, we were crushed. The crazy thing is, this was the exact same scan that was interpreted by the neurologists at WakeMed as having no major issues. Again, the lack of certainty has us reeling! How can two sets of doctors come back with such different results? We've been told that interpreting MRIs is highly subjective - it's all shades of gray, literally. But still, it seems odd that we would get such differing opinions. We have another meeting today with the Duke neonatologists to ask more questions and I have reached back to WakeMed to see if they might re-look at their initial report. In the meantime, we are trying to stay positive that the MRI is really only 1 predictor and the true measure will be when Peter shows us what he can do. We are praying for a miracle...but for now, we'll try to take it one day at a time.