Tuesday, August 21, 2012

Tide is Turning

Hi All,

Tide is turning.  This morning Meara woke up at 4am in pain, then woke up again at 6am and threw up after going to the bathroom.  She was up after that and in a bunch of pain all morning.  

Then…she ate a good lunch and warmed up with speech therapy.  She then walked all the way down the hall to physical and occupational therapy and threw a ball with two hands over her head, caught the ball with both hands, crawled on all fours with her fingers extended out.  She did all of this and it was her only real therapy since she's been here.  So, ten minutes into the session the PT said she was going to refer us to outpatient therapy because of how well she is doing!  Bam!  Major morale boost to Megan and I.  Who needs sleep when she shines through.

She'll continue to get therapy while we are here but that won't hold us up in leaving.  Now we are here until they clear up the infection situation.  Basically they need to wait until cultures come back from the lab and the fluid stops draining from her head.  Once that happens we can head home and she'll be on IV antibiotics for about 12 weeks.  She'll have a little fanny pack with a pump and it will be connected to the central line.  Megan and I will administer the meds and do the flushing.  A nurse will come to the house once a week to change the dressing and take blood to make sure the infection is clearing.  The neurosurgery nurse said that she'll be able to return to preschool, ride a bike, and play at the park with the IV in so that is a morale boost as well.

Alright, needed this kind of day.  She's been sleeping since therapy (almost 4 hours) but I've been too ramped up to take advantage and nap.  I've got too much energy from thinking about the progress she made this afternoon.  

Christy and the kids arrived this afternoon.  Megan said that Ainsley loves playing with her cousins already.  We are so happy that they are here to help us with the babe.

As I sit here and write this post I'm listening to this amazing collection of songs that my friend Martin gave me.  I listened to it during the second surgery and I'm returning to it again.  Listening to the song "Cloudy Shoes" by Damien Jurado just about captures it lately.  Thought I would share the lyrics because it just about hits the nail on the head at the moment.

Love and Peace everyone.  Many trials and tribulations in life are painful at the time.  Finding wisdom and meaning in them is what will turn "coal into diamonds".  
Love and Gratitude,
Aaron & Megan

"Cloudy Shoes"  by Damien Jurado

I wish that I could float
Float up from the ground
I will never know
What that's like

You have a way about you
I wish that I had
Thought it was impossible
To live and love like you

Funny how we all can change
If we just try to
Thought it was impossible
To live and love like you

One day you will be taller
Taller than the sky
Until that day you will be
Here with us below

Magic will do what magic does
Living in your eyes
Do you think someday soon
You will have the time?

I could use another hand
To help pull me through
Someday theses hospital stays
Get the best of me

Trying to fix my mind
Still trying to fix my mind
Trying to work it out
I'm still trying to fix my mind

Still trying to fix my mind
I'm still trying to fix my mind

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