Day 32

This afternoon Paxten Pearson passed away. The emotions that are currently racing though my head are exhausting me...all emotions that I am certain Libby and Blake have far surpassed. Mainly at this moment I am blindingly aware of how blessed we are. There have been few and far between times in which I have looked at my little life and felt the lucky ones but tonight I do.

I acknowledge that and mainly, I praise the Lord for his faithfulness

And I also acknowledge that Gods faithfulness is still around Paxtens death. We may not see it and we definitely do not understand it but it is there. Gods amazing and unfailing faithfulness is what gives root to the Hope that each of us at some point cling to. And I so pray this for this greiving family...

In the midst of a hard and emotional day for this mommy, my Piper continues to improve. She is tolerating her overnight ng feeds and is steadily eating more each day. Because she still isn't so great at communication, we had to guess that she was nauseous and began her on small doses of zofran which has helped her appetite and energy immensely. At this point Piper is off the I've pole all day except for a two hour infusion and for her overnight feeds. She has been taken off of all antibiotics (except preventative ones) as well as tpn and lipids. She's walking around as much as her little legs can and though she is not walking independently as she had just begun to before transplant, she has happily walked 3 or4 steps at a time into my arms today. Because things continue to look beautiful we are scheduled for a Tuesday discharge and will be going around the corner to the Ronald McDonald apartment for another month or two.

One specific prayer request I have is for Pipers bloodwork. At day 30 she had labs drawn to be sent off and to have her DNA inspected... We are hoping and praying for this to reveal 100% donor cells with none of Pipers.. The test results will take 2 weeks to get back and that will be the first step towards seeing if this transplant was indeed a success. The second step will be a lumbar aspirate to look at her narrow. We will hope and pray for the same 100% donor cells to be apparent in her marrow as well. This will be done around day 60.

Last week during rounds, Dr.Haight was talking survival rates and she told me that post transplant a patient has as much of a chance of mortality from the side effects as she has of a relapse. This is all providing Piper shows donor cells and the transplant is a success. So much of this battle is actually waiting. It's doing really horrible things and then sitting back and waiting to see if they worked. Id be lying if I said I was not tired of it all but as Piper continues to cross milestones I will continue to love on her right across the next one.