A Day in the Life

**So many of you have asked for a mailing address for Lucy.  I can't tell you how much that means to us.  There are some really awesome people in this world (and Atlanta.)  I hope you will understand that we can't give out a local address.  We just don't have the space in this small room for much more than our clothes!  The other problem is that we just won't be able to transport anything more than what we came with back home.  Thanks again for loving our baby girl and our family.  If there is something you want to send, please feel free to send it to the address on our blog.  I can assure you that Lucy will get anything that is sent to her!

**I also want to say a huge "thank you" to everyone who has sent me an email or a blog comment offering meals, help, etc.  Right now we are just trying to find our groove here as a trio.  Please don't be offended if I don't respond personally to you and take you up on your request, but as you will read below our days are very busy and very emotionally taxing.  What we need most are your prayers.  

Today's schedule is fairly typical for a day here on the Rehab floor:

8-8:30        Occupational Therapy
10-10:30    Speech Therapy
10:30-11    Occupational Therapy
11-11:30    Child Life Therapy
11:30-12    Physical Therapy
1:30-2        Speech Therapy
2-2:30        Recreational Therapy 
3-3:30        Physical Therapy

Some days she has music therapy.  That is a favorite of Lucy's already.  Yesterday was a great day.  She pushed through with such determination and pride.  I was shocked to be real honest.  It was probably the hardest day she has had (physically and mentally) in 16 months.  This morning, its been a different story.  She's done well, but it is obvious that she is tired.  She's struggled more in Speech and her walking legs haven't cooperated as much as they did yesterday.

It's hard not to be discouraged as we watch the decline from yesterday.  Erik and I both have gotten a healthy dose of reality today.  Lucy has a long way to go, but that's why we are here.  We just have to keep reminding ourselves of that.  Trying to understand how much of Lucy's struggles are her recovering from the past few weeks' events or what might be permanent is the hard part.  I have had a few hard days recently.  Getting a bigger picture understanding of what Lucy will have to fight is part of why we are here in Atlanta.  It's hard watching your baby struggle.  Its not a comfortable place in which to live.

My friend Amber came to visit tonight and it was so nice seeing a familiar face. (and a big thank you to Erik's  friends the Boeschens for bringing us dinner.)  Amber is a Speech and Language Pathologist here at CHOA and I felt comfortable telling her about some of Lucy's challenges today.  As we talked, Erik and I tried to walk her through the events of the past few weeks.  I could tell that she was very stunned by how far Lucy has come taking into account where she was 3 weeks ago.  She told me that I had not written some of the details I shared with her.  What I apparently failed to mention over the past few weeks was that Lucy had an EEG that declared her almost brain dead on June 5th.  We had instated a DNR that banned any and all life saving measures.  We knew our baby was dying and we had begun to accept it.  We were planning for it.  We told Ella that her sister would soon go to be with Jesus.

In a meeting with Dr. C and Dr. W (two amazing doctors) we talked about what Lucy's future held.  We all agreed that a Lazarus moment would be the only thing that would save Lucy's life.  A few days after that meeting I sent Dr. W a text that only said "we have had our Lazarus moment."  It was the most poignant sentence I have ever written.  It was amazing.  I have no doubt that God has heard the prayers of many and chose to shine his grace on our child.  Almost brain dead.  That's what we were told.

Today was hard, but nothing will ever compare to the 5 days that we spent watching our daughter die.  Today was a gift.  As hard as it was, today was nothing short of a miracle.  Thank you God.  Thank you doctors.  Thank you nurses.  Today was a gift.

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