Family Vacation...Interrupted

"We have to take Emma back to the emergency room in Orlando" I called to tell my mom in tears on the second morning of our vacation.  She rushed off the golf course, leaving my dad, brother and brother-in-law, to help us figure out what to do.

We were so looking forward to five days away because it was the first time since Christmas 2009 that my whole immediate family would be together.  My sister, her husband and two kids, as well as my brother and his girlfriend were all going to Mom and Dad's place in Fort Myers for a fun-filled extended weekend.  When we scheduled Emma's surgery we mentioned this vacation and they said that it should be fine since we weren't going out of state.  When the swelling occurred and they said talk with us in a week, we knew that meant right before we would leave.  However, after calling several times, we never got to talk to the right person.  Based on what they'd told us previously, we thought it'd be okay to continue as planned.

Our time started great!

Silly cousin!

Happy Grandma and Grandpa with all their kids together

And then Friday morning we finally got to speak with Emma's surgeon's nurse.  We had sent her pictures of the swelling and she said, "We need you to bring Emma to the ER in Orlando."  They were concerned about the amount of swelling two weeks after the surgery and the dangerous possibility that there was spinal fluid leaking out of her incision.  We feared the worst (another surgery immediately?) but hoped for the best (they just need to check her out and she'll be fine and maybe we can come back?).  We made the difficult decision that Mark would make the three hour drive back with Emma and I would stay with Elsie.  

The good news...Emma was okay.  No leaking spinal fluid, no infection.  They stayed overnight in the hospital in order to see her surgeon the next day.  He basically said, we just need to wait another couple weeks to see how she's doing and whether or not the swelling is diminishing.   The bad news...they didn't get to come back to family time.  So, I got a lot of one on one time with this little one...

and Mark got a lot of one on one time with this little one...

On top of all of this, as my mom was driving Elsie and I to meet Mark this afternoon, Elsie had another seizure.  They're always scary.  We still haven't heard if the doctor has reviewed her MRI and what the results are.  So, please keep praying for both of our little ones.  Pray that Emma will continue to heal and get stronger and stronger...since her second little hospital stay, she's actually done great.  And pray that we have a diagnosis and treatment plan for Elsie in place soon.

MRI tomorrow

It's Elsie's turn.  Our poor little lady has to has to have an MRI tomorrow afternoon to continue to diagnose and know how to treat her seizures.  Praise the Lord she hasn't had one in over a month.  We'll wake her early to eat a bit and then she can have a bottle and then from 9:15 until she wakes up from it, maybe around 5 pm, she can't eat or drink anything.  Our friend will stay with Emma and I'll be solo with Elsie.  Please pray for us.

Emma is doing okay.  She goes back and forth from wanting to play and be up and about and just whining and wanting to lie on the couch.  We still just have to wait until Tuesday or Wednesday to talk with her doctor about how she's doing after a week on this medication.  Keep praying for her too.

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.  :(