Here it is Saturday, February 5th, 2011 as I sit next to my little Maggie with a cold, cough and 100.4 fever.  Monday was supposed to be the big day but now it's another waiting game and we've already been waiting.  This new journey began back in September of 2010 when our check in with Dr. Grossman showed she had not even stayed the same weight, but had lost.  This was a first.  We tried various stategies to help her eat and even had a feeding and swallowing evaluation at Children's Hospital of Philadelphia in October.  The new was good and bad.  Good news:  no functional problems, speech on target and milestones met.  Bad news:  severly underweight, I'm sorry, their term, "mildly unserweight but close to moderately underweight" due to behavioral pychological issues with food.  Made sense at least.  In her short 2 years, she has had either pain  from food, other negative experiences like vomiting after eating food and now we are always telling her what she can't eat.  Recommendations:  feeding therapy with a child psychologist and other suggested startegies.  Come back in 6 weeks and if she is the same, ng tube feedings.  It was a shock!!  I knew she was having trouble but I didn't understand the urgency.  Then to find out Blue Cross Blue Shield would not cover any of those therapies and fights covering formula.  GREAT!  Wait I have 24 hours to still change insurance at work...off the phone I go!  And home to make sense of the day.

Next came our next visit with Dr. Grossman, Maggie's incredible GI at CHOP.  He immediately calmed me from what the feeding team said and offered new more options to try before we need to do the tube.  One was a medication to help empty her stomach faster so she would get hungry, the other an appetite stimulant.  We tried the first one for 6 weeks and at times considered trying the stimulant but couldn't get a consistent read as to whether the first was working.  We were scheduled for our follow up on December 29th and thought for sure she had progressed.

Due to the Christmas snow storm we had rescheduled our Delaware trip for the same day and therefore the whole family was at this appointment.  Talk about fate.  Dr. Grossman came in and Maggie was so happy to see him and give him a little gift we got for him!  Then he cut to the chase and turned the monitor around to show us her curve for weight and height.  He explained that both her weight and height had not changed in over 9 months and at this time it was "alarming."  ALARMING?  Dr. Grossman doesn't use those terms lightly!  I welled up immediately about to hear what we feared.  There was no time to wait, Maggie needed an ng tube for night feedings soon to reverse this trend!  He explained also that this age is critical to the development of their brain and it is more important than ever to do this.  We agreed to add the appetite stimulant and see if it made any difference but things weren't looking good.

Now why isn't she eating?  Is her eosinophilic esophagitis flaring?  Is she reacting something new?  So here comes another scope.  Please some answers!