Wednesday, July 13, 2011

The Scoop

After much disappointment, we have bounced back and reconnected with the original doctors we were working with back in December of 2010.   You may remember that we had switched gears because this other group of doctors thought they might be able to help us use Nora's stem cells.  Well, here we are back at square one using donated umbilical cord stem cells that are heavily tested for any diseases, defects, etc. immediately when the baby is born.  The mother, donor, also goes through a battery of infectious disease testing to ensure that everyone is safe and healthy in the long run.  This hospital is a few minutes away from the one we had originally chosen, so we will be headed down to San Diego on August 1st, having her treatment in Tijuana on the 2nd, and returning to Reno on the 6th.

We are finally getting excited again at the possibilities for Lila and her future. Lately, I have been a bit discouraged because it is becoming more and more apparent of the things that Lila is not even trying to do anymore.  This tends to happen when we spend time with a group of typical kids that move at five times her pace.  One example that I have shared with a few people is that her friends will be playing outside with her in the sandbox, run inside to get a Popsicle, run back out, go into get some water, and run back out to play. All of this happens while Lila just sits there an waits/processes.  She thinks about how the patio is too hot for her to get out and crawl inside, and there is nothing to hold onto in order to get inside before the kids actually come back out, so she just waits.  This is a bummer, and I know is nothing we can control, other than giving her encouragement to do what her friends just did and maneuver accordingly to get there.  However, it still bums me out.

That all being said, we pray that the stem cells will give her the processing speed that she needs to move a little more quickly, and the excitement/motivation to be a bit more independent in her actions.  Please help us pray and allow for Lila to be safe during this treatment and beyond!


  1. praying for you everyday guys....

  2. We have 36,198 points and would like to donate them all. How do we do so? We got your info from JT.