A Few Fun Finds

Did I ever tell you that the neuro at TCH who initially gave us Bowen's diagnosis was the most rude and negative person ever? That she would never meet her milestones? Or be what we hoped she would be? I pretty much hate him. And I also love proving him wrong. I don't say I can fully blame him though. Looking at a picture of her MRI you would see a few things. You would see that the right side of her brain is bigger than her left. You would see that her frontal lobe is abnormal. You would see that her parietal lobe is abnormal. You would see that she has too many folds on her right side. You would see that her corpus callosum is just not right. Sound scary? It is. You know what else is scary? Epilepsy. And the fact that we can't tell a seizure from a normal behavior. The fact that we don't know if the medicine is working or not. The fact that being hooked up to a fancy machine can't even give doctors answers. The fact that surgery will never be a black or white...

"Never in a million years'' were the words that the neurologist used when he met with us yesterday to give us the results from Bowen's MRI. A s most of you know she had an MRI Saturday and we so appreciate all the texts we have received checking on us. Sorry we have not written back yet as we were still processing everything. Long story short, the neurologist has diagnosed our sweet Bowen with  ''Hemimegalencephaly" (I still can't pronounce it either so let's just say HME for short). Now try to stay off Google....here is the rundown: It is a rare (really really rare) neurological condition/brain disorder. Her neurologist has been practicing for 30 plus years and has only seen 3 prior cases. One half of the brain (the right hemisphere in Bowen’s case) is abnormally large (i.e. developmentally different). This was NOT something anyone did (believe me I asked..did I eat something wrong? Do the wrong things?). She had this before she was b...