A bump in the road

Last night as we were giving Emma a bath we noticed some bulging and swelling at the bottom of her incision.  We took some pictures and emailed them to her neurosurgeon this morning.  This afternoon a phone call confirmed what we didn't want to hear...she's leaking spinal fluid and it is pooling at the bottom of her spine.  So now she's on a medication to slow the circulation of the fluid.  It may be that the slowing of the fluid will allow her body to close the hole on its own.  If after a week on this medication, the swelling is just as bad or worse, we go back to the doctor and it likely means he needs to go back in and patch it up.  ie, another surgery.  Please be praying this week.

Dynamic Determination

...when wielded for good, it's an amazing trait to possess.  But this afternoon, after Emma had been lying on the couch for three hours for resting time and then a nap, I was asking her to stand up and she was determined not to.  The scene that followed was not a pretty one.  It ended with me on my bed in tears.  After calming myself down, I had a great little chat with my daughter and we made a new plan.  When we hear Daddy walk in the door, let's walk over to the gate to greet him.  He'll be so happy and so will both of us.  Five minutes later, we hear Daddy and I try to put her down and she just cries and won't put weight on her legs.

But today, Daddy was the hero.  He must have drank some super-Daddy juice at work or something.  By the end of the night, Emma had walked all over, taken a bath, stood to play for a while, and climbed up one and then two and then three steps!  (Maybe I should be the one going to work.)  :)  She really is doing more and more each day, despite how reluctant she is, or how poorly I'm doing at encouraging her.  Please pray that Emma would be determined to do what it takes to get better.

The first time she walked after the surgery, Sunday right before we left the hospital.

Two words

She's home!

Emma's been making steady progress these few days.  She is off of all the machines and her incision is healing nicely.  The therapists and doctors would like to see her up and about, taking steps and standing and they would pretty much send her home.  The problem is not so much that she lacks the strength to stand.  She is super anxious about being "messed with" in any way that might cause her pain.  Pray that tomorrow (Sunday) she is able and willing to stand and take a few steps and that we would be able to bring her home early. 

Emma's nurse took her down to the lobby where there is a cool Disney themed play area.  She had so much fun!

On the up

The doctors are all saying that Emma's doing really well and right on track where they'd expect her to be.  She's able to sit up now and some physical therapists will see her tomorrow to help get her moving.  She's still very apprehensive and scared about anybody touching her.  Changing the bandage on her back is awful, she screams and sobs through the whole thing.  However, we just got the news that instead of three times a day, it can now be changed once a day.  Woohoo!! 

Emma painted my nails today!  They are beautiful.

Teddy bear has been doing everything Emma does.  He too gets his heart checked, and his blood pressure taken, and even gets his bandage changed.  He gets scared too.  The nurses have been great about this!

"Poor Teddy Bear" Emma says.  :(

A few special visitors...

Emma was able to see a few new and fun visitors today...

And then there was...

Thank you for your continued prayers. Emma is more and more like herself.  No infection or leaking spinal fluid at this time.  Pray for her heart and anxiety though, as every time a nurse or doctor enters the room she is agitated and upset and every time she's touched (which is every hour) she can really lose it. 

Tired and stressed

Does this describe Emma or me?

Yes.  (I've had about two hours of sleep in the past 38 hours, so this is going to be brief.)

Recovery so far has been rough for Emma.  Until this morning if she wasn't sleeping, she was crying.  That made for a long hard night.  Today she ate some and played some and has slept much better.  However, when the nurses or doctors have to do anything to her, she freaks out.  We've had to change dressings and an IV.  She screams "Mommy!" at the top of her lungs while I hold her hand brush her hair and cheeks and say, "I'm here.  It's okay.  We're trying to get you healthy and strong."  It's awful.  

Keep praying against infection and for no leaking of the spinal fluid.  We've not been told either has occurred yet.  And pray that we both get some sleep tonight.  

This woman's sole job at the hospital is to play with the kids, explain what's happening and make their stay as comfortable and fun as possible.  Emma wanted to sit up, she's explaining that it's okay to play lying down.  :)