Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Thursday, June 13, 2013

1 Week Til Take Off

Sitting at our second to last ERT at Phoenix Children's.  If the marrow donor's physical goes well tomorrow, we will be starting our travels to Minneapolis after next week's ERT.  We have been busy to say the least preparing for this journey.  We won't get the official "Go" signal until possibly Wednesday next week, which makes it somewhat difficult to arrange all the logistics.  If for some reason something shows up in the donor's physical then it could mean we are delayed until another donor is confirmed (currently one is undergoing first round of tests) or the Dr.s may then opt to use Cord Blood.  He is only matching 5 of 6 chromosones for cord blood whereas the adult marrow donors are matching 8 of 8 so this is still the best option at this time.  

We are still seeing small positive changes in him and are still dealing with small issues with his central line and G-tube.  Just when you solve one problem, another one arises.  This week he is getting blood coming down his central line. This really shouldn't happen unless it is a purposeful blood draw.  So we are having to flush him and change his caps more frequently. 

Last weekend marked a couple milestones for Peyton as well.  She has decided to not wear diapers to bed with somewhat mixed results.  We have had some wet free nights and some not so wet-free nights.  The linens are getting washed frequently!  For now, I am just waking her up in the middle of the night for a potty break.  I'm up with Coleson most nights anyway!

Also, she had her first sleep over.  I was fortunate enough to get to spend a relaxing weekend with my girlfriends last weekend and I found out on Saturday that she spent the night with our neighbors.  Thanks Melissa and Don!  She can't stop talking about it.  She is so grown up!

This next week we will be trying to get all the last minute arrangements made and hopefully getting to see some of our friends before we go.  This will be quite a ride!