From BaBa to Joise's medical team about Josie's heart

 Dr. Feinstein labels PH,  "the great humbler."  Watching Team Josie assemble from 2010 when we fell in love with this courageous little girl has been humbling.  Kim and I had a steep learning curve to the responsibilities a very unique sub-set of parents have. Reading the e-mails between us,  as Dr. Feinstein recovers from having his leg broken, I am grateful for the personal attention each of you are giving to honoring HIPPA and getting Josie the best medical care available.  I can only Hope that I accept , as Josie accepts, that we are doing all that can be done after  the 3 years she went untreated in China.

      I have been told to "watch the patient," and from my non-medical view, Josie is happy.  She loves playing with June and each time Josie is in-hospital,  June writes get-well cards for "my Josie," to which Josie replies,  "Thank you, my JJ." Recently I watched my GodDaughter assume the responsibilities of being married.  A favorite photo is Gina standing beside her "sister," Danielle,  who was adopted into my brother's heart at 18 months, several years before Gina arrived miraculously.  Danielle's son, Colin,  was diagnosed,  in-utero, as having cleft palate and I had the privilege of watching Danielle research and find and get the very best plastic surgery repair possible.  Colin has a sister Aubrey who is lovely but not without a few medical issues.

      All of you have the vocation to ameliorate conditions we bring to you in Hope.  You  endure our frustration and impatience.  You have families of your own,  need vacations,  have many other patients and must endure the complexities of our health care system which may in some cases coerce you away from the care you would choose to provide.

      We are navigating this latest connection protocol since being able to spare Kim the ordeal of airports, rental cars, hotels, flights with O2 concentrators, etc.  I appreciate all of you and as you read Kim's increasingly exhausted e-mails,  please know that you are treating Kim as well.  If someone would have said that Josie's pneumonia in October 2013, after being treated to Disneyland by Make-A-Wish, would bring Dr. Fagin and Cat onto Team Josie, I wouldn't have believed it.  Josie's treatment  is a lot like that:  a succession of miracles  which empower me to enjoy every breath and  step she takes.  I have a mantra when the terror overcomes me:  "Dig a little deeper and do what must be done." And then Josie smiles, and it is enough.

Sincerely,

BabaJoe