So Sweet…

This little sweetie pie is growing up way too fast!  She is going to be “graduating” from preschool in a week…where has the time gone!?!  I vividly remember picking Jack up from the very same preschool years ago, and every time little Miss Sophie would be screaming from the top of her lungs from the back seat of our van.  Her teacher, the wonderful Miss Lori, remembers this too…oh...

Oh What a Week…

And it’s only Wednesday!  Medically speaking things have been stressful, and today’s VCUG and urodynamics study results only added to the stress.  The results confirmed what has been suspected for some time, Lucy suffers from a neurogenic bladder.  Even though we suspected this; hearing it, discussing the results, and comprehending what we are going to have to do for Lucy is difficult.  ...

Rough Week…

My heart is hurting as I type this, our little one is struggling.  Her health is declining,  she is changing both physically and mentally.  There are moments when Lucy is Lucy, and moments when Lucy is extremely irritable and agitated, screaming inconsolably for hours.  Common everyday situations can set her off, and there is really nothing you can do to calm her.  Dr. R was...

Back to Reality…

We returned home from the land where dreams come true late Saturday night, actually it was more like very early Sunday morning.  We had a fabulous time and are so grateful that we had the opportunity to go on this trip of a a life time!  We have so many wonderful memories that continue to be talked about over and over by every one of us.  This was our hope, what we wanted most of all…lasting...

Making Memories…

I have wanted to sit down and write so many times this week, but we have been too busy making memories!  Let me preface this post by saying that I am not sure that I can write in words adequately how we have been feeling,  After coming straight from a very difficult admission to the land where dreams come true, our emotions have been all over the place!  We have truly been blown away...

Happy Mother’s Day!

Indeed it is!  We did it, we accomplished what seemed like the impossible!   We arrived at Give Kids the World around lunchtime!  We are here! Don’t even ask how many bags and suitcases we brought with us…it was too many to count.   We made it through airport security with dozens of vials of IV meds, liters of TPN bags, at least 100 syringes of sterile saline, bags...

Give Kids The World…

Anyone who has had the privilege of staying at Give Kids the World, can hardly talk about it without sheading some tears of joy. The Today Show did a segment about Give Kids the World and it’s founder, Henri Landwirth, last summer.  Click on the link below to see it for yourself… http://www.disunplugged.com/2010/08/21/video-give-kids-the-world-featured-on-nbcs-today-show/...

Home…

Just a quick post to let you know that we are finally home, we arrived home at around 10 pm.  As we were leaving the hospital Lucy left screaming from pain and fatigue.  We were able to administer her night time meds before we left which made it just a little easier for us to come home and put her to bed in her own crib.  Again, the enormity of the last three weeks hit me when we...

Still here…

We are still here at 7:55 pm waiting on Lucy’s infusion company to deliver all the “stuff” we need to take our girly home.  I knew that it was going to take them most of the day to get things together as Lucy has one very complicated order, but honestly I am soooooooooooo ready to go home! Lucy is not having a good day pain wise, requiring more PRN doses of pain meds than she has in the previous...

The “D” Word…

It’s officially in the works… discharge or the “D” word as it is know around here!  Everyone is working hard around here setting things up for us to go home tomorrow so that we can get on a plane destined for Disney!  Our infusion company is getting all of Lucy’s new IV meds drawn up, and tomorrow her new TPN orders will be faxed over so that they can set to work on making up her new fluid...

Withdrawal…

Lucy has been experiencing withdrawal symptoms.  She has been a lot more irritable, jumpy, and sweaty the past 24 hours.  She woke every four hours in pain last night and required some PRN doses of Dilaudid to get through it.  Of course when Dr. R came in to see her this morning she was charming and pleasant, the moment he left, her mood changed…go figure.  We adjusted her PRN...

To Sleep or not to sleep…

Lucy is choosing not to sleep today, bad decision in my opinion, but she really isn’t interested in my opinion.  She is tired, just can’t seem to fall asleep again.  Dr. R came by this afternoon and ordered her to take a nap, she is refusing to follow doctor’s orders.  Maybe a day of no napping means a night of great sleep…here’s hoping!  She is officially off the IV Dilaudid...

Some Things…

Lucy has her days and nights confused…some believe that this is a result of our stay down in the PICU.  Perhaps, but I feel that it goes hand in hand with her dysautonomia.  Anytime you mess with Lucy’s “schedule” you deal with the consequences! Lucy is waking for the day at around 4:30 am.  She stays awake until around 2:00pm, this is a very long wake period for her.  When...

Slow and Steady…

Just look at who is sitting up tonight…Miss Lucy!  She sat for a few seconds tonight, just long enough to have her picture taken. Things are s-l-o-w-l-y starting to improve.  Lucy’s labs are all trending in the right direction and her blood counts are holding steady.  We are being more aggressive with the Lasix which seems to be working to pull off A LOT of extra fluid.  Her...

Date Night…

Drew, Lucy, and I are spening our Saturday night together.  We did laundry, washed Lucy’s hair, and watched a movie together.  So normal, yet not.  Drew had yet to spend a night at the hospital during this admission for many reasons.  I miss him, it is nice to have him with us tonight sleeping next to me in the reclining chair that I have spent many a night next to Lucy’s crib...