NIH

Well, today is the first day of the NIH trip.  Kim is already there.  Trisha and Steve are on their way.  I'm the babysitter.  Kim texted on her way to NIH, " On the shuttle.  All is well  This is so surreal to have some answers after years of prayers.  It is weird to be here.  Brings ups a lot of tear-filled memories in the hospital." 

She called this morning as Zach was getting ready for pre-school. She said, "I had to call.  You should be here with me.  All those years, it was you and I in the hospital, getting transfusions, having blood tests, talking with doctors.  You of all people should be here to get the answers with me.  I don't know why I'm so emotional.  I hadn't suspected this.  It brings back so many memories and the frustration of dealing with a disease without a name."  She went on to explain.  There are some interesting things I've learned.  Low cholesterol is part of ALPS.  I've been told I have the lowest cholesterol my home  doctor has seen - but neither of us knew it was connected to anything else.   At NIH, they took 21 vials of blood!!!  I asked if that couldn't put me into some kind of shock, but they said I would be fine as my blood was good.  They will freeze some for possible future tests.  They asked me what I took to bring me out of  the ALPS episodes.  I told them they just gave me a transfusion.  They said, "That wouldn't have brought you out.  That helped the symptoms, but wouldn't have ended the episodes.  Normally they start and don't have a way to stop.  To stop the episodes, you normally need something like steriods"  I told them that I also had asthma, so many times I was on prednisone for my asthma.  Who knew there was a blessing in having both ailments?  Interesting, huh? 

She said, I also learned I'm not out of the woods.  I had thought, "I'm over it.  I'm good now."  They said, "Well, no.  That isn't true.  If you get a bad viral infection, you could end up as bad as Drew.  In the spectrum, Drew is on the severe side. You are in the middle.  And then your sister and Dad don't have anything noticeable.  We're so glad we get to see the whole family."

Well, Halle is getting tired of helping me type, so I guess we'll go do something fun.