About Me

Our Avery was diagnosed at one month of age with Cystic Fibrosis (CF). CF is a life threatening genetic disease that affects the lungs and digestive system. We are working hard to find a cure. This website will keep you up to date on Avery and our fundraising efforts for the Cystic Fibrosis Foundation.

Tuesday, May 3, 2011

Tomorrow is the big day

Tomorrow we go in for Avery's endoscope at 7:15am.  I am so very happy we are scheduled so early.  Avery won't be hungry and grumpy....we maybe grumpy it being so early. So wish us luck!  No EE!

Just an update on feeding therapy.  Avery is doing well.  I watch her eat with Poko through a double sided window.  She has eaten some pretty safe stuff...peaches and apples pureed.  I don't know when they will advance her on to some more difficult stuff.  I am liking the set up and it seems like Avery is eating more at home. (Is that really what is happening? It is probably wishful thinking that it will be that easy!)  The occupational therapy has thrown me for a loop doing some activities to work on her 'seek sensory' issue.  I thought we would be working all with foods to get her ready to eat, but no.  They have been doing some balancing and rolling cart stuff.  I asked to sit down with her next appointment to figure out the purpose of these exercises.  I just don't want anything to be a waste of time...for anyone!   

We have our last meeting for Great Strides tonight!  Just three weeks away! 

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