Wednesday, July 24, 2013

Red Wagon Ride

Last weekend we roomed-in at the hospital with Miss. Sophia for 48 hours.  Saturday night we were informed that we were going in the little red wagon ride on Sunday.  WHAT?!  The little red wagon?!?!  The moment I have been waiting for has finally come for Sophia!  The nurse found the wagon and I hid it in the bathroom to make sure that it didn't disappear! 

After reviewing Sophia's schedule, Jeremiah and I decided that the 10:00AM hour would be the best time to take her out.  She didn't have any medications due, no feedings, no nothin'.  We headed out around took a few minutes to load her up with all of her equipment.  Before long Sophia was well on her way to experience life beyond the hospital.  She was going outside for the very first time!

Loading her and her equipment. 

Whenever we travel with her, we will need to take all of her equipment with her.  The CAM, cardiac apnea monitor, the moniter for her vitals...

 ...her ventilator with the purple rubber on top, oxygen tank, and suction.  Jeremiah graciously offered to carry her oxygen and suction on our outing.

 Oh yeah, we also need her ambu bag and trach supplies.  Not to mention her diaper bag!  Anyway, here we are off to the great outdoors.

 I love us and I'm so glad that Sophia Lynette was in a great mood!

 Here we gooooo!!!

We finally made it outside and the first thing that she did was throw up her hands because the sun was too bright.  I loved it!

Then I had a little was a big cry.  After a few moments, I introduced her to the sun.  I've told her about the sun, we've read about it, and seen it through the windows.  But today, she got to experience to it.

Still fighting the sun but she is sooooo happy.

 Time to get moving and she's loving the beautiful morning.

 So far so good and she's tolerating the stimulation.

 It was a beautiful Sunday morning for a stroll.

 Every once in a while we stopped to look at the flowers and the trees.

I introduced her to grass.

Just a year ago we were planning to take her to this very place to spend her last moments on Earth.  Sunday was a different story.  I felt like that was the first day of a new beginning.

 Life is good!

 We stopped for a brief moment so that Jeremiah could suction her.

Have I mentioned how much I love this baby?!

Then it was time to say goodbye to the sun and head back inside.

 I turned around and she was just clapping away.  I hope she enjoyed herself.

 Mommy and daddy loves a happy baby.

She took a three hour nap when we returned to her room.  It was a great day!

Sophia Lynette has had so much going on since she has been born.  There have been so many things that I wanted for her.  All I have ever wanted to do was make her not hurt or keep her suffering to a minimum.  Most of all, I wanted to give her childhood experiences that every child should have.  To feel the sun on her skin.  To feel the wind in her face as she was being pulled in the much coveted little red wagon.  To hear the leaves rustle in the wind underneath a shade tree.  All these months I have been so grateful that she has been alive.  But on Sunday, she experienced life and lived.  
She lived.

Saturday, July 13, 2013

Lifting Head

Last week was a huge week for Sophia!  She had several physical therapy sessions that focused on two things: strengthening her hip sockets and lifting her head.  She doesn't like the hip socket exercises too much but she does well lifting her head.  She works so hard and I love her so much for trying.  When she finds her stride, she is a character!  Oh, and she's starting to breathe on her own...again!  I love when she's off the ventilator because she can maneuver way better without having the circuits that aren't flexible.  When she's off the vent, she doesn't beautifully.

Random picture.

Another random pic.

Then she decides to see if I'm still taking pictures.  She's a pro at playing possum...really.

Just chillin'...mostly because she can.

And she's off!  Look at her lifting her head!

You go baby!!!

Then she gets pooped and needs a little break.

Here's bonus footage if you've made it this far :o)  I love Sophia Lynette!!!

Wednesday, July 3, 2013