the one after the dark and twisty one
My dad said my last post was all "dark and twisty"... Okay he really just said it was dark. (But I have been watching lots of Grey's Anatomy and the twisty part is from that)
It is also probably where I am getting my fear of death...I mean have you ever seen that show? Every surgery almost dies. But its so addictive I can't stop!
I told our pediatrician today that the nurse in me is steady, unafraid, and aware that complications are rare. The mom in me is freaking out a bit.
So Emmaus' team of doctors met and agreed that a 1 stage surgery is best for her. Which means no brain mapping (pretty much where they put the EEG leads ON her brain-making 2 surgeries necessary- and making this process much longer and more stressful- she would literally of had wires coming out of her scull that are attached to her brain measuring electrical activity- ummm no thanks)
The tuber they want to remove caused 37 out of 38 seizures she had while she was being monitored. So that means there will probably still be some seizure activity after surgery- but hopefully very few and something meds can control.
Dan and I are still processing and deciding what is best for our sweet girl. We are pretty sure surgery will give her the best shot at seizure freedom or reduced seizures and we are hoping will improve her development.
Speaking of development. We started pool therapy today which she loved. Until she fell asleep at the end...which is typical- she's a funny kid.
We also had her 15month check up 25lbs & 30.75 inches. Big baby!
Just wanted to update after my last post that was all dark and twisty.
Thank you all for the encouragement and for still reading even after I talked about diarrhea.
Love,
La
It is also probably where I am getting my fear of death...I mean have you ever seen that show? Every surgery almost dies. But its so addictive I can't stop!
I told our pediatrician today that the nurse in me is steady, unafraid, and aware that complications are rare. The mom in me is freaking out a bit.
So Emmaus' team of doctors met and agreed that a 1 stage surgery is best for her. Which means no brain mapping (pretty much where they put the EEG leads ON her brain-making 2 surgeries necessary- and making this process much longer and more stressful- she would literally of had wires coming out of her scull that are attached to her brain measuring electrical activity- ummm no thanks)
The tuber they want to remove caused 37 out of 38 seizures she had while she was being monitored. So that means there will probably still be some seizure activity after surgery- but hopefully very few and something meds can control.
Dan and I are still processing and deciding what is best for our sweet girl. We are pretty sure surgery will give her the best shot at seizure freedom or reduced seizures and we are hoping will improve her development.
Speaking of development. We started pool therapy today which she loved. Until she fell asleep at the end...which is typical- she's a funny kid.
We also had her 15month check up 25lbs & 30.75 inches. Big baby!
Just wanted to update after my last post that was all dark and twisty.
Thank you all for the encouragement and for still reading even after I talked about diarrhea.
Love,
La
I talk about diarrhea all the time.
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