Today...

Today, we took part in a promotional video for the hospital this morning.  Of all mornings, Lucy chose today to sleep in.  We had to wake her up just before 9am because the CEO of Nemours and the president of the hospital were waiting outside of Sleeping Beauty's room to come in and film/take some pictures.  It all went well, which I am so very thankful for because when it comes...

Not too bad...

That is our girl is not doing too badly.  Her labs are indicating that she has pancreatitis but it's not as bad as it could be.  We have NEVER been on top of her pain, never, but it appears that we are doing a fine job of keeping on top of her pain for the time being.  PCA's are a good thing, when they work.  Wonders never cease when it comes to Miss Lucy, what you expect to happen...

Just wanted to let you know...

We arrived back safe and sound to our "home away from home" this afternoon.  We are tired and relieved to be back in familiar surroundings, familiarity breeds comfort, and comfort means more sleep for the mama tonight :).  Meds, TPN, and fluids are all up and running and on schedule.  Pancreatitis has set in just as we expected it would, we are staying on top of her pain with a PCA...

Getting ready to go...

We are hanging out waiting for our transport team to come and take us back to DuPont, they should be here sometime before noon.  Lucy is feeling a little better this morning, pain is not as intense, and no more vomiting.  We played catch up all night with Lucy's meds.  In other words, the mama didn't get much sleep. Unfortunately, we had to make many compromises...

We Aren't in Kansas Anymore...

I suppose if we were we would be covered in snow at the moment....but you get my point.  We are missing our "home away from home".  This adventure has been challenging on every level!!  Thank God I have the skill set that I do, and that Drew is with me to keep me clam!!  Our girl is sick, she is not feeling well.  She is in pain and has been vomiting for the past hour....

Stent is in...

The doctor was able to place a stent in Lucy's bile duct, quickly.  The entire procedure was done in just over an hour.  He came out and told us that Lucy had a significant fibrous stricture with lots of scar tissue.   When I asked him about the debris found in her bile duct, he said very politely in his Nigerian accent, "Oh yes, you are Americans you always want to know how much...

Johns Hopkins...

When I woke this morning my prayer was simple, "God please give us ALL the strength to endure everything that we will have to endure today... " Lucy did well during the transport, the transport team did well too.  They only had to infuse about a half dozen meds :O during the ride. Luc watched her beloved Doc McStuffins, and had the transport team drawing pictures for her along the way. We...

Moving Forward...

Lucy is currently stable, and believe it or not a plan is falling into place.  Lucy girl, now that I have just written these words please don't go and change things on us.   We hoped and prayed that Lucy would "come back" to the point where she is currently.  She is at the point where we feel that we can consider all of our options, and weigh the risks and the benefits of each with...

From Lucy's Point of View...

This is a picture of the top canopy and bottom rail of Lucy's crib.  Imagine laying on your back and looking up at these happy sights all your waking hours...Lucy is so loved!   We are gearing up to be transported to Johns Hopkins Hospital in Baltimore on Friday.  Lucy is excited to go for another long ride in an ambulance...not sure she realizes what's in store for her once we...

A Gift...

For Valentines day we were given a gift...the gift of HOPE!  We finally heard back from the specialist at Johns Hopkins, he is willing to take Lucy's case.  Now begins the massive task of arranging all of the details necessary to transfer our girl down to Baltimore for a surgery date of next Friday.  Thanks for all of your thoughts and prayers, love and support.  ...

Still Here & Still Waiting...

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Hurry up and wait...

Yep, the title pretty much sums up our life these past few weeks, we are waiting to hear back from the GI specialist at Johns Hopkins as to whether or not he is willing to take Lucy's case.   I was told that they are discussing Lucy's case today.  My stomach is in knots, as is my brain, my heart, and just about every other organ in my body today.  Drew and I had a wonderful opportunity...

Determination and a Million Obstacles....

I was giving Sophie a bath last night here at the hospital when I asked her about her day.  Specifically I asked her what they talked about at church. "Determination", she said, "but I'm not sure what I should be determined about". The way she said it made me smile.  The kid is the definition of determined, she never gives up, she always tries to find a way.  I told her that...

At the Moment...

I just consumed what seems like my one thousandth grilled cheese sandwich on 12 grain bread in the last three months.  Lucy and I headed out on an adventure to leave a special Valentine on the office door of our special friend Andy.  Sadly we couldn't get to Andy's office so we changed course and headed to the cafeteria instead, but not without first sending our special Valentine through...

Spa day...

 I love THIS smile, it makes me smile!  Our little mermaid.... she takes bathing to a whole new level...