August 14, 2013

We are on night 5 in the hospital and the reality of this “hurry up and wait” process is setting in. Everything is pretty routine day in and day out…nurses check vitals, doctors come in and talk, more nurses check vitals, more doctors come talk. Riley is totally content; it truly is amazing how little a baby really needs to be happy…dry diaper, bottle and Mom…that is all. More labs were done today on Riley which basically means more blood draws…this little lady is such a trooper. Friday she slept through an IV being placed and both yesterday and today she barely made a peep during the blood draws, I cannot say enough how fortunate I am for her sweet demeanor. The immunology team will use the results of all of these tests to determine the form of SCID she has and how best to proceed.
Chris brought Presley up again today to visit and also make another attempt and getting a cheek swab to see if she is a potential match for bone marrow transplant. She got really creeped out by the process yesterday but today was a new day and after we talked to her we were able to understand her concerns and do things a little more on her terms. After huddling on the floor playing “doctor” and letting her give us (chris, myself and the real doctor) “shots” and “checkups” for a good 20 minutes she plopped on my lap and was ready for her turn.

Her understanding of this whole situation amazes me, we have done our best so far to remove as much of her fears from it as possible and break things down to her in basic concepts that her little mind can grasp. It has not been easy but given the circumstances she is handling it all very well. We enrolled her in pre-school which she will start tomorrow; we feel it is really important to keep her on a consistent routine and give her something that is all hers, something that will be a distraction from missing Riley and I but also something to help her continue to thrive.

We are now awaiting lab and donor match results, in the meantime we are to simply keep Riley in this room to limit her exposure to any sort of infection and keep her healthy until we can proceed to transplant. This process could still take a few weeks so patience is the name of the game.

Thank you again to all who have called, texted, baked, donated, chased Presley around, etc…over the past week, every little bit helps and we are so thankful.

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