VACTERL Conference

This has been a big month for my clan.  We just got back from Disney and now we are off to the VACTERL Conference.  Truth be told, I am looking forward to the conference more than I looked forward to Disney. Disney is about suspending reality.  It is pure fantasy.  It is an escape to […]

Read More VACTERL Conference

Bonus Illness

September/October have been very interesting.  Remember the Ginsu commercial? We’ll give your child VACTERL Syndrome at no cost to you.* But wait there is more.  We’ll also send you                                 food/environmental allergies and eosinophilia esophagitis. *except never ending maintenance. Ethan […]

Read More Bonus Illness

Mirror Mirror

This is my least favorite time at work. It is the end of our fiscal year and I have to do staff evaluations. Now 8 of my 9 employees received an average to excellent rating. But of course those don’t count. The only one I care about is the one who was struggling. Part of […]

Read More Mirror Mirror

More words for the internet void

So Ethan has made a full recovery. Changing his diet really did the trick. Things are starting to return to what we call normal. I had a funny conversation yesterday. I was having lunch with a colleague and she mentioned that she had just gone to the doctor to see her “lady plumber.” TMI…TMI She […]

Read More More words for the internet void

This week on planet Earth

This is it, surgery week.  Each of Ethan’s surgeries has come with its challenges.  This time it is that he has to fast for 4 days.  He can have liquids, but I cannot imagine that making much of a difference. Over the weekend, we took him to Hershey Park.  Today Jenn is taking him to […]

Read More This week on planet Earth

Cutting Up

As is usually the case with the medical profession, Ethan’s July 7th surgery dated got bumped. It took us 3 weeks to get another date. The new day is August 7th. Waiting waiting, always waiting. Our vacation plans were goofed up, but I am sure we will salvage some time. Now I just need to […]

Read More Cutting Up

Maloney Baloney

This is your gut Today has been all about meetings, one right after another.  I am sitting at my desk for the first time today.  I need to think about something other than work.  So I blog.   We just got a surgery date for Ethan.  He is having a Malone procedure.  Unlike all of […]

Read More Maloney Baloney

Wide Awake since 4am

I was sooooo looking forward to sleeping Friday night.  The plan was to sleep in till 8 or 9.  Ethan apparently had other plans.  He contracted another UTI, probably because he is not the best and scrubbing his hands before cathing.  At 4 he came into our room complaining of stomach cramps…oh no…here we go […]

Read More Wide Awake since 4am