Day +763

I guess it’s been about a month since our last update.  All is going relatively well here and Krystie did manage to once again survive her double dose of Father’s Day. : )

Now that it’s nice and warm here (about 100 degrees today – that's about 130 degrees warmer than it was just a few months ago!) we’ve been up to lots of fun summer activities such as taking Krystie to the zoo as well as a riverboat ride down the Mississippi River. 

We also had a great trip back to Arizona and CA a few weeks ago and Krystie got to spend some quality time with Rick’s family and our dog Lexi.  The best part was that Krystie also got to go swimming in a pool for the first time since her transplant.  Krystie also got to spend time with her nanny that she hasn’t seen in over 2 years and it was quite nice to see that somehow she still recognized her and seemed totally comfortable being held in her arms again.

On the medical front, we did get the results of Krystie’s 2 year post transplant studies.  While most of her test came back as expected, once again, the MRI is the most disappointing.  Her brain continues to shrink (not good), but at least the part that isn’t shrinking is showing some improvement (good).  We just need the good to overtake the bad.  Reviewing the MRI seems to depress us every year and I don’t know if we will put her through another one again next year since there really isn’t much they can do to change anything other than to just wait and see and hope for the best.

We also did a great in home interview with a Japanese TV news program who had heard about Krystie and was very interested in her story.  We are still waiting to find out when the story will air and hope to get a copy when it does.  They are an NBC affiliate, and we had fun spending some time with them.

And now that Krystie is such a well-seasoned traveler, we are heading to NJ this weekend to spend some time with my family.  We hear it’s been raining there quite a bit lately, so hopefully things will clear up for our visit.

We would also like to send out a special thanks to Soulumination for taking such great pictures of us at the NTSAD conference back in April.  This is a great organization that takes pictures of children living with life threatening illnesses.  If you haven’t already, you can check them out at www.soulumination.org.

And finally we do have a big request for those other families that are currently receiving in home medical care for their children.  We are running up against a wall in trying to get any in home services for Krystie either through our insurance or through the state.  If you are getting any in home care, could you email me directly at basebcs@aol.com and let me know how you got it (i.e. insurance, gov’t agencies, hospice, etc.), how many hours, etc.  Any info would be greatly appreciated!   . 

As always thanks for checking in on Krystie and if we don’t post beforehand, have a terrific 4th of July weekend!