Energy for Life Walkathon 2013

A huge thank you to all of you who came and walked with us today.  We could never do this alone, and we thank God that we don't have to. We walked not only for Lucy, we walked for our friend Wyatt (July 23, 2002-September 27, 2013), and for all of the families effected by this devastating disease. Make a video - it's fun, easy and free!www.onetruemedia.co...

Oh me, oh my...tomorrow is the day!

Please join us, tomorrow,  Saturday September 28th For the 4th Annual UMDF Energy for Life Walkathon  to be held at Campbell's Field in Camden, NJ.   Registration begins at 7:30am with the walk to start at 9:00am.   (Believe me we know that's early, but we are going to move mountains to be there and you're gonna to want to see that:)   Help us reach our goal...

Getting better...

Yesterday was the first day in weeks that Lucy was awake and alert for a good period of time.  She was more "with it" than "out of it".  We are all so very thankful for that!  It looks like we have turned that infamous corner once again! This toothless smile picture was taken this morning.  And yes, that's an IV in her doggie Petey. Infectious disease has some of the specifics...

Can I give you a little advice...

We have just a little bit of experience with hospital life :), in case you didn't already know. We are living the hospital life again,  and I thought now might be as good a time as any to let you in on some of the details of just how exactly we manage to survive while here. Caffeine, lots and lots of it, coupled with some Excedrin Migraine.  I'm only sort of kidding about the lots and...

Shhhh...

Let her sleep, for when she wakes... she will move mountains! Slowly, steadily, she is getting there. Labs look about the same today, bile cultures are growing everything and then some. We're waiting on the specifics from the lab so we can determine our course of action.   Sleep and feel better soon my love, we're looking forward to seeing your spunky personality ret...

Sleeping Beauty...

She puts Sleeping Beauty to shame, sleeping more than 21 hours a day at the moment. We arrived back at DuPont last night just in time to change TPN.  Lucy thought she would make things a bit more exciting for the transport team when they arrived.  She greeted them with the sounds of her cardiac monitor alerting us all that she was throwing out PVC's and dealing with some arrhythmia's.  Our...

Third time's a charm...

Lucy feels about as good as her hair looks today Third time's a charm.  Dr. O was quite familiar with Lucy's anatomy and was able to place a stent successfully in Lucy's bile duct. As an added bonus he was able to navigate his scope around her gj-tube, which means he spared Lucy from having to go through another procedure tonight to have a new tubie put back in.  I'm sure if she was...

Second verse same as the first, a little bit louder and a little bit worse...

This morning Dr. R and I were discussing how today could not have come at a better time.  Lucy is not feeling well and is need of having this procedure done today! Lucy has pancreatitis already, yesterdays lab work is telling.  We are going to have to monitor her labs very closely after this procedure. We arrived at Hopkins around noon and I kissed Lucy good night around 3:00pm...

Stenting her is the right thing to do...

I just ate my breakfast at 3:45pm, or maybe that's considered lunch, or maybe even and early dinner.  Needless to say my head is pounding from ignoring my hunger all day. It has been one of those weeks already, and it's only Tuesday.  If I'm being completely honest, it's been one of those years... It's possible that I have too much to do in a day...just saying. After getting everybody...

A long day...

We are home and exhausted, it was a very long day!  We have an amazing medical team, a truly amazing medical team!  This afternoon we had four of DuPont's finest all come together at the same time to discuss the really tough stuff of life with me, yet again. Lucy's cholecystostomy tube was in the correct position and did not need to be replaced today.  This was both a relief and a...

It never gets any easier...

I am  staring at the monitors watching my little one's heart rate, oxygen saturations, and blood pressure, the wave length is constant and slow...so the opposite of what we are used to seeing with our girl.  Something is going on with Luc.  Whatever it is it's sucking the life out of her at the moment  We're just not sure yet what it could be.  I've probably written/said these...

She's worth a cure...

(Picture from Last year's walk.) I know, I know...it's been a while.  I promise a more detailed update really soon, because believe me there's a lot I have to write about.  But for today I have very important matter to talk about... I am sooooo behind in announcing this, but better late than never...right!?! It's that time of year again when we join together to show our support...