Sunday, February 28, 2016

expectations, realities, and outcomes

What I was expecting this week during Moose's stay at the EMU (epilepsy monitoring unit):

- several seizures right away (big ones)
- Moose sleeping a LOT
- me sitting by him and petting his head as he slept
- going home before Friday evening (as would happen if things happened that quickly)
- strength to get through the hard seizures

What I got during this week:

- a few small seizures the first two days and nothing on Friday
- patience waiting for the seizures
- so.much.tv (I expected him to be exhausted and sleepy a lot)
- Big A having to stay Friday night through Sunday
- Big A experiencing his first of Moose's grand mal seizures (big, convulsing) - and his second
- a completed embroidery piece (haha)
- hardly sleeping

This week was very different from what I had in mind. But I learned to trust in God's strength and not my own and that I cannot go into these things with expectations or very little sleep.

I think Moose had the time of his life these past five days. Basically all the movies and Mario Kart Wii he wanted (although we did complete almost all of his homework!) and good food. He cried when we left.

Moose had 2 seizures the first two days, small ones. Nothing on Friday. Then Saturday two big ones. Saturday was hard. Hard for Big A there, seeing. Hard for me home, not being there. Sunday has been the best being home now.

Dr. P, our epilepsy specialist down there, said basically that Moose's seizures are coming from the same place, most likely the same malformation/lesion/birthmark on his brain that we saw in his MRIs.

He is going to meet with his team (to get a wider perspective than just his own) in the coming weeks about whether to go on toward a surgical route. He seemed fairly confident that is what would happen but he does want the neurosurgeon's opinion, too. After that, we aren't sure of a timeline but surgery to remove this lesion - so brain surgery.

I thought this would freak me out. I mean, that's dangerous and tricky and the brain is so delicate. But I really feel at peace, having a direction to go. None of this is set in stone, of course, but Big A and I are wanting a solution that would most likely end Moose's seizures and if surgery is that option, great. But we will be in prayer until that decision is made, looking for God's plans.

Thank you for all of your prayers this week. Thank you to everyone who helped us practically: Debbie, Kim, Joan, Denise, Mary, Cari, Annie, Kara, etc etc etc. I have the best friends!

1 comment:

Stacey Ayars said...

Well......We're just going to keep being faithful in prayer. Praying first and foremost for complete healing to the God who formed his precious body. Praying for you and A and your hearts. Praying that you may trust Him. Praying that He will help you. Praying for peace and courage and endurance and strength and lots and lots of grace. Praying and loving you ALL.

happy followers