A special way to honor Addie

This video was made for Addie by Aunt Katie.  You have had quite an impact on her heart, Addison Grace.  And your obsession with her makes it clear the impact that she has made in your life, as well.  Katie choose a very appropriate song to express her desire for your life.  And I have to agree, she found one that expresses exactly what daddy and I pray for you every day!  You have defied so many odds, sweet girl, and you continue to kick butts and take names.  And the best is yet to come!!

"I Lived"

One Republic

Hope when you take that jump, you don't fear the fall

Hope when the water rises, you build a wall

Hope when the crowd screams out, they're screaming your name

Hope if everybody runs, you choose to stay

Hope that you fall in love, and it hurts so bad

The only way you can know is give it all you have

And I hope that you don't suffer but take the pain

Hope when the moment comes, you'll say...

I, I did it all

I, I did it all

I owned every second that this world could give

I saw so many places , the things that I did

with every broken bone, I swear I lived

Hope that you spend your days, but they all add up

And when the sun goes down, hope you raise your cup

Oh, I wish that I could witness all your join and and all your pain

But until my moment comes, I'll say

I, I did it all

I, I did it all

I owned every second that this world could give

I saw so many places , the things that I did

with every broken bone, I swear I lived

Uh. A frustrating week!

March 16, 2015 - Last week, at our weekly clinic visit - Addie's liver numbers were slightly elevated. Not terribly elevated - but enough to get some hearts pumping and a concerned medical team.  When liver numbers bump up, especially in the first few months out of transplant - rejection is always a concern. Especially when there is nothing viral going on.  And our team of doctor's at Pittsburgh always error on the side of caution.  They are very proactive and aggressive in Addie's treatment.  I LOVE this about them.

From the same set of labs last week, Addie's prograf level (this is the amount of immunosuppression she has in her blood stream and gives us an idea of how well immune suppressed she is) was 5.8.  Considering they want to keep her level at 10 right now - her level is very low.  This MAY be the reason why her liver numbers are elevated.  So the plan is to increase prograf slightly and increase her steroids so IF she is rejecting - we can stop it right away.  Dr Kyle also ordered an ultrasound for Friday (of last week) to make sure that the liver still looked good and that all of the arteries and bile ducts were flowing nicely (see, I told you they were aggressive).  Thankfully, her liver looked beautiful.  Dr Kyle requested repeat labs for Monday (3/16/2015) morning.

As if this new wasn't enough, as we were walking out of the hospital from the ultrasound, Addie's transplant coordinator found us to tell us that Addie's EBV level was elevated.  Very elevated.  Crap. Seriously?? EBV (or mono) is a virus that most adults either have experienced or have been exposed to.  Most of us carry this virus without issue.  However, for a transplant patient, this virus can reek havoc.  Since it attacks the lymph nodes - in an immune suppressed patient, if left untreated, it can cause a form of lymphoma.  So getting it under control is vital.  Typically, in a transplant patient, EBV is treated by decreasing immunosuppression to allow the body to fight the virus.  Easy enough. Right?? Unless your body is starting to reject its new liver and decreasing immunosuppression would just make the rejection worse.

We repeated labs yesterday and unfortunately, her liver numbers elevated a bit more.  The theory, from last week, that elevated liver numbers were from a low prograf level was void.  Its likely rejection.  So, as of today, the plan is a liver biopsy.  This will allow us to see whats going on with Addie's liver and to make an effective plan with how to move forward.  The frustrating part is that we treat one of these issues - we fuel the other.  So we need to know exactly what we are dealing with and a biopsy will give us a clear picture.  We aren't sure of the details - but a biopsy will be scheduled for later this week.

The feelings of concerned, worried, scared, feeling defeated are coming bursting back into our hearts.  This situation can be treated. It's just a bit more complicated than what we hoped for. (for some reason, Addie likes complicated scenarios).  We will get through this.  Just as we have gotten through all of the other obstacles that we've faced, we will do what it takes to get Addie through this.  We trust that God's in control and that He will continue to show his power.

On the up side, Addie is starting to have much more energy.  She is slowly eating more and it is becoming much harder to keep her down.  Most days, she'd rather play with her sister that sit on the couch.  AND... the girls are even starting to fight with each other.  Sounds silly, but we love seeing things return to normal.  These days, its easy to find joy in the small things.  When life is shaken up - its much easier to be thankful for the things you typically take for granite.  Thats the silver lining, I guess.

One step closer to home

March 5, 2015 - Today was an exciting day for us - Dr. Shindi gave us the go ahead to leave the Ronald McDonald house and head to Ben's dad's house, in Ohio, for the duration of our stay. The drive from East Palestine OH is only about an hour and 10 minutes to CHP and since Addie is 4 weeks post transplant, they were changing clinic from twice a week to once per week.  Dr. Shindi thought it would be good for Addie's recovery to be in a home that is more familiar to her and would provide a more comfortable setting.  As thankful as we were for the Ronald McDonald house - we were ready to move out from our one bedroom apartment.

It was a comfy little apartment...

The Living Room

 The Bedroom

The Kitchen

The View (the very best part)

We were ALL ready to leave.  Even though we weren't going home - this was one step closer to home and a huge step up from Ronald McDonald.  

Smiles all around as we were getting in the car

Grandma Carolyn had dinner ready and waiting for us when we walked in the door.  Dinner was delicious.  Seriously, there is nothing like a home cooked meal, especially when Grandma makes it.  Even Addie had a plate of chicken - and she LOVED it!

Have I mentioned how thankful we are for our families?? We honestly couldn't get through this journey without the love and support that our family has provided.  From phone calls, to texts, to cards, to visits, to opening up their home for us to live for a few weeks.  I couldn't ask for a better family.  We are blessed beyond words.