Feel the Love...

Make a video - it's fun, easy and free!www.onetruemedia.co...

A Special Day with Lucy...

On Wednesday January 15th, 2014 we declared it "Sophie and Lucy Day"! On Thursday January 16th, 2014 we declared it "Megan and Lucy Day"! And on Friday January 17th we declared it "Jack and Lucy Day"! They each have their own special and unique relationships with one another, especially with Lucy.  To see the four of them together is amazing, they were made for each othe...

For the Love of Lucy T-Shirts...

http://www.kellysteamstores.com/For-the-Love-of-Lucy So many are asking how they can help us… if only we could make happen what our hearts really want.   Mitochondrial disaese, a progressive degenerative disease of energy metabolism in which the body does not convert food and oxygen into energy correctly has robbed our little girl's body of its ability to function and live life.  ...

Sleeping Beauty...

A bed only suitable for a princess! Our amazing team of docs and nurses assembled a beautiful canopy over the top of a hospital bed so that our princess could have company lay next her as she sleeps.  She has only ever slept in a crib with a tent overhead while in the hospital, this is the first time that she is sleeping a bed.  A tent overhead was a must, after all we "camp" when we...

Surround Her with Love...

In our family we play this game...if you could have a superhero power what would it be? Mine, to be able to be in more than one place at a time. On Monday, when we were discussing all of our options for Lucy's end of life care, I leaned over to Drew and whispered into his ear that I want to change my superhero power.  I want to be able to go back in time. Lucy has a real life superhero power,...

For the Love of Lucy...

The hardest part of loving someone...   is letting go. Our goals for Lucy have always been to give her the best longest life…we did that, and now it's time to let her go.  I can't believe that I am writing this post!  Mitochondrial disease has taken its toll on our little girl's body.  It is because we love Lucy with all of our hearts that we are incapable of letting...

Stressful Day...

Let's be honest here, more like stressful year and it's only the second week of January! We are all breathing a sigh of relief tonight, and by all I mean Lucy and everyone who is involved in Lucy's care. Today we transitioned Lucy from the PCA pump of dilaudid to a much higher dose fentanyl patch.  We did this for a few reasons, the main reason being that we are really want to bring Lucy home,...

Let the Sun Shine In...

At the moment, we could use a little sunshine in our life.  We opened the blinds, and let the sun shine on her face.  Isn't she lovel...

A Picture Says a Thousand Words...

Today, was the hardest day ever! We discussed our options for Lucy's end of life with our palliative doctor and main doc. No decisions were made, except that we decided to make no decisions right now. We need more time. Our hearts are breaking…hurting…torn.  Watching our children's hearts breaking...it's awful… indescribable. You know the saying a picture says a thousand words, I...

January 4, 2001...

Jack was born on this day 13 years ago…13-years-ago! This was the day I became a mama - one of the best days of my life! Seeing your child for the first time, it's the definition of love at first sight.   I remember his birth like it was yesterday, really I do.  I find that amazing, considering I can't often remember what I did yesterday.  A nurse friend of mine told me that when...

Reality...

It hit us hard today! Drew and I met with our beloved doc this afternoon to discuss our reality, Lucy's reality.  There is nothing more that we can do for our girl medically, to fix what is causing her pain.  Comfort care is really the only option left remaining. I won't go into any more detail tonight, my head is spinning with too many thoughts and my eyes are really red and swollen from...

January First...

I'm boycotting New Year's Day.  New year, new me…it's not all it's cracked up to be.  I'm  happy with status quo, or same ol' same ol', or even better freezing time. I'm not in a good place to be making any predictions about the new year.  Now is not a good time to be doing that. Because it was a holiday today, Drew had the day off.  He and I switched places for the afternoon...

It's New Years Eve...

But then again you probably knew that. Me, I woke up, more like was woken up by the urology resident, at 6:29 this morning and had this realization.   We are going to meet our health insurance deductible, and most likely our co-insurance limit, on the first of the year.  How many of you can claim that? I'm going to ring in the New Year with my favorite little red head…although her hair...