Leah's Update

Ok...so here's the exact link to Leah's TV interview which aired Friday night (one night late due to the storm coverage on Thursday):

http://www.koinlocal6.com/content/mediacenter/default.aspx?videoId=11072@koin.dayport.com&navCatId=156


Video EEG Seizure Study Results
Ok, so I wanted to update you on Leah's video EEG results. We met with the neurologist yesterday in her office instead of by phone because the news was so bleak. We were basically told that yes, all of the behaviors we were calling seizures, really are seizures. She was thinking there had to be a motor movement disorder occurring with the seizures, which would explain Leah's survival of 70 days. But with the study showing that the seizure activity is truly pretty continuous in her brain, and also in her body....here's EXACTLY what she said to us.

Giving Leah seizure medications is like giving her water. With a brain malformation like Leah's, she's guessing her receptor sites are not able to be bonded to by the medications to work to control or even minimize her seizures. When we asked if it was worth a try to at least give a medication other than the 5 ml of Phenobarbital that she gets at bedtime she told us in her honest opinion...NO...it doesn't even make sense to try. Then, after saying that, she recommended admitting Leah to the hospital where she would be given a lethal dose of Adavan to cause her to pass away. From the shock on our faces, she then said we could take her home and stop feeding her....and in her opinion this is a very peaceful way to die. "Her mind will just get fuzzy, and over a period of time she'll pass away."

The feelings of sickness inside me at this medical "advice" is so great! The leading expert is essentially telling us she thinks we should just put Leah out of her misery. But the reality is, I honestly feel like Leah hasn't suffered at all....it's us who are the ones suffering as we watch her body STRUGGLE! We know that seizures are not painful to Leah....she's just not aware during them. She has many alert moments in between them and she's really with us at those times. When we told her immediately that those two options were not conversations we'll be having with her, and what else could we talk about in regards to helping keep Leah comfortable, which in my opinion includes her need for sleep more than the few hours a day she's been getting it. If the seizures in the dr.'s opinion are not able to be helped at all, then what options are we left with to even let her body rest. She wrote a prescription for Clonodine...a blood pressure med, that in smaller doses is given to help relax children to allow them to sleep. So....we'll fill that today and see if she's able to get more rest.

This much we know.....her seizures do seem to be getting worse. And it's most likely that there will just be one that she isn't able to pull through or come out of. But today, she is here, and her life matters and is of value to us. She still is contributing and her purpose here is not quite done yet.

No one wants to hear a medical professional say, not only is this the worse case of seizures I've seen, and I'm not willing/able to help at all....so I think you should choose to utilize assisted suicide.

The grief is hitting so hard, and so deep, and while all hope is not gone....the medical side of it might we might be through pursuing. Since the medical side says she needs to die, and by our own hands...That is not where are hearts are as Leah's parents! We will let Leah live as long as she's meant to.

The rain is pouring down outside my window, and it matches the tears pouring down my cheeks. I am feeling a bit more rested, as we had in home nursing the last 3 nights to allow mom and dad to sleep. They'll be coming back Sun-Thurs. nights next week as well.

Leah's concert tonight will be a wonderful celebration of her life and the lives she has touched. And from the response I've already received about attendance, the number of lives she has touched is incredible!