Alexis has been struggling through the night, trying to breathe.  Joe and I are praying, every night, that she makes it through to the next day.  Please Lord, don’t let her stop breathing.

I took Alexis to her pediatrician’s office last week in desperation.  I knew there was nothing she could do as Alexis’s case was way too complicated and involved to come up with some brilliant answers.  I just felt so desperate to get her help.  I called her specialist we’ve been working with at Scripp’s today to get her an urgent appointment.  I told Joe he needed to accompany us to this visit as we needed to stress the urgency of care needed for Alexis’s case.  He doesn’t usually go to the visits, but we needed him to be involved.  I present things in a calm, logical way to the doctors, and Alexis is her joyful, vibrant self, not showing any signs of the seriousness of her health.  I needed Joe to engage at a different level.

They did Alexis’s PFT’s (pulmonary function test) and her lung function was only at 46%.  They were quite concerned.  They gave her a nebulizer, filled to the top with a mixed solution, and had her inhale it for 20 minutes (until the solution was gone).  They waited for it to set in before taking her PFTs again.  After almost an hour went by, Alexis’s lung function was still at 46%.  In the meantime, we went back over history, new tests that had been done since our last visit, another allergy test (3^rd skin test in 2 years), and the fact that Alexi s has lost 15 pounds in a month.  We are all visibly concerned and no one has any answers.  Dr. Woessner comes into the room and looks at Alexis.    “My mystery child,” she tells her.  My stomach churns as I think of Alexis’s life, her health, being such a mystery in so many ways.  Doctors unable to give us answers, or should I say, correct answers, about what is going on in her body.  We spent 3.5 hours in Dr. Woessner’s office going over her case, testing and trying to come up with some answers.  She believes it is a part of Alexis’s Dystonia but none of Alexis’s neurologists concur.  My gut has told me, for the past five years, that her Dystonia was some how responsible for her chronic cough.  I spoke to her neurologist in St. Louis as well as Dr. Fink in Michigan.  Neither one of them feel the Dystonia is responsible for her cough or her breathing problems.  Dr. Woessner comes up with a few possibilities she wants to pursue and lets us know she’ll contact us within 2 days.  So we wait….and we pray for our little girl to live.