We were very excited to meet a wonderful group from Walgreens of Youngstown, Ohio recently.  They traveled to Pittsburgh to participate in a Walk-a-thon for the Ronald McDonald House.  They heard about Katelyn, were touched by her story and came to walk in her honor.  And… as if that wasn’t enough, they came bearing gifts!  We were truly blessed to make such great new friends and we appreciate their kind hearts, encouraging words and prayers for Katelyn and Zoe.

A Little Surprise

   We got a little surprise today.  Katelyn and I were over at the hospital so that she could run around and play in the atrium on the 6th floor.  It's a large, open room with a very high ceiling.  We spend time over there when we need to get out of our room for a while.  Katelyn always hopes that other children will show up while we're there.  She gets pretty lonely without her brother and sisters.
   A nurse started playing with her today and then invited her into Austin's Playroom.  In the 3 months we've been here Katelyn has never been able to go in because it's for inpatients.  Many things are off limits to outpatients but Katelyn has come to accept it.  When the nurse invited her in, Katelyn said that she isn't allowed because we live at the Ronald McDonald House and don't stay in a hospital room.  The nurse left to go check on things and when she came back she said that Katelyn was more than welcome to join the fun in the playroom!  She got to play on the computer, paint a picture, socialize with other kids, play on the wii and before we left she was given a teddy bear.  What a nice, unexpected surprise!

Plan B

   We were so blessed to be able to spend a week as a family in Pittsburgh!  We did lots of sight seeing and had a wonderful time exploring.  Dropping Jeff, Shannon, Caleb and Zoe off at the airport was very hard and we really miss them.
   We've decided it's time to start working on a 'Plan B'.  We've been approved by the doctors to go home IF we can find a jet that can get us from Western Colorado to Pittsburgh within a 6 hour time limit... that's 1,730 miles.  So now the search is on for a corporation that would be willing to help us out when the time comes.  We can't take a commercial flight because if the call was to come at 2am we wouldn't be able to book a flight and make it to the hospital by 8am.  Please join us as we pray for God's will in this situation.
   Katelyn and I have been here for 78 days.  Yesterday we moved from our apartment to the one across the hall.  Our old view was overlooking a massive graveyard and it was getting a little depressing.  Now we have a wonderful view of the city!  The view wasn't the only plus... we now get the afternoon sun which is good for Katelyn's Crigler-Najjar.

Our old view

Our new view

Thank you for your prayers and encouragement.  It really means a lot to us!

Tired

Katelyn and I are getting pretty tired of waiting.  We've been here for almost 9 weeks.  Still no liver cell transplant.  But we were able to get connected with the right people at the hospital and were given tickets for Jeff, Shannon, Caleb and Zoe to fly out here for Spring Break!  They'll be here in 3 days and will get to stay for a little over a week!  We are so excited.  This couldn't have come at a better time.  We are all starting to get pretty weary.
We are so thankful for some new local friends.  They have blessed us with trips to run errands and taken us on some fun trips around town to get us out of our apartment.  As always we are still praying for some good news from the hospital to come soon.

Local News



One of the camera men

 

Katelyn and I were on the news here in Pittsburgh with Matt Cooke, who plays hockey for the Pittsburgh Penguins.  Since we've been living here for almost 2 months, we were asked to attend the news event where Matt was named the new spokesperson for this Ronald McDonald House.  We were honored to be a part of it and to be able to tell a little bit of our story!
Here's the link to the video...
http://www.post-gazette.com/video/?v=1518779712001



Katelyn, Matt Cooke and me

Waiting

We are still in Pittsburgh waiting for liver cells.  Yesterday marked exactly 4 weeks.  The Ronald McDonald House has definetly become our home away from home.  We found out that the doctors have been receiving other liver cell offers but none of them have met their standards.  So we are waiting... and praying... and will continue to stay hopeful.  We know God has a plan for us and we are excited to see how it will all fall into place.
The emails, facebook messages and words of encouragement have been so great.  I can't even explain how much it means to us.  Thank you so much for your support and prayers.  I hope to be able to write again soon with the great news that the right liver cells have become available.

Details

I've had some people ask exactly what the liver cell transplant is all about.  I got some details from the doctor so I can share the steps with you...
When we got here a few weeks ago they did a CT Scan on Katelyn.  Then they spent days doing calculations to make sure that the upcoming radiation treatment is aimed in exactly the right place.  Once the right liver cells become available Katelyn will be admitted to the hospital.  They'll hook her up to an IV, take some blood and then we'll spend some time waiting for the procedure to start.  When the liver arives at the hospital the doctors will start working to harvest the cells.  They'll take Katelyn back to the room where she got the CT Scan.  They'll get her back in the exact same position as last time and prepare her liver for the cells by doing the radiation treatment.  This step is very important.  It will prep the liver so that it will accept the cells.  Right before the procedure starts the doctors will use the IV line to administer medicine to make her fall asleep.  They'll make a one inch incision above her belly button... that's where the major artery is that runs to the liver.  They'll give her 3 different injections of liver cells through that artery over the course of 24 hours... roughly 8 hours between injections.  Once the entire procedure is done she'll wake up and spend about a week in the hospital so that they can monitor her progress and work to get her medication at the right level.  Right now she's on phenobarbital, which will counter act the anti-rejection medication.  The doctors will slowly lower the phenobarbial while they raise the level of the anti-rejection medicine until they get everything just right.  Within a week or two the new liver cells should start to become active.  The plan is that she'll be able to spend less and less time under her light each day.  Then she'll be released to the Ronald McDonald House for about 2 more weeks until she is released to go home.
When Katelyn is done we'll go through the same process with her little sister, Zoe.