Brainstem dysfunction.
This is the term that both Dr. Goker-Alpan and Dr. Schiffmann used to describe Hannah’s neuronopathic Gaucher symptoms. For whatever reason, I didn’t flinch when we talked about her abnormal eye movements (supranuclear gaze palsy, ocular motor apraxia), her vocal cord paresis (weakness), or even her developmental delays.
But for some reason, calling it “brainstem dysfunction” just seems like a permanent knife in the heart, you know?
Dr. Schiffmann wants to see Hannah back in 4 months, and we go back to the NIH right after that for an EEG to check for seizure activity (and other consultations). Seizure activity on the EEG, even if we don’t see Hannah having seizures, seems to be the next thing to look for. That and problems with her internal hearing (need to try and complete a BAER/ABR study).
Brainstem dysfunction.
Oh Carrie… I wish I were there to hug you!
I think whenever you put the word brain in there, it makes it sound spookier. Hugs from me too.
It’s baffling, isn’t it? You handle so much with grace, and then 2 words can hit like like a punch from behind. But, Carrie…you *are* grace to me…and amazing, and so much more. Thumb your nose at those two words and focus on our favorite three…Little Miss Hannah. 🙂 Me & the girls are thinking of you & praying for you.
So sorry you had to hear that. I know peronally how hard it is to hear. Michaela was just diagnosed, last Thursday, with a Brain Stem Glioma and vascular spasms in the brainstem and cerebellum.
Hugs to you and Hannah!
.-= Laura´s last blog ..Quoting Michaela =-.
More hugs from me.
Those are some hard words to accept.
.-= Barbara´s last blog ..A Pioneering Life =-.
Truly wish this were not the case and you just had the special time with a beautiful girl who as everyone can tell in every picture seen has a tremendously beautiful spirit as well. Your family and Hannah are in my daily prayers.
Many hugs! That is very rough to hear. I know exactly what you mean by “knife in the heart.” You’re in my thoughts and prayers.
.-= Petula´s last blog ..More than just the fruit =-.
Those are words. Remember that. They don’t describe Hannah. They don’t touch on her smile, her touch. Remember that.
I wish I could say more to help you.
.-= MiaHysteria´s last blog ..Tweet Me Friday =-.