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 our [...]

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 quietly [...]

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 his previous surgeries, [...]

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 [...]

Hooky

Today was supposed to be our biannual visit to the spina bifida.  But as “luck” would have it, Ethan had a stomach virus and could not go.  Awe…shucks, I so look forward to going into DC to get bad news.  Now I could have gone into work.  But I already had the day off and [...]

The Ick Factor…rated G for Gross

Halloween was great…blah blah blah.
 
So this morning, I was doing the “procedure” with my spawn, when the catheter came out of his rear.  This is a bad thing.  Trust me.  One word sums it up spray.
 
Sooooo I was a little grossed out (trust me on this…I am not easily grossed out).  Luckily my wife was [...]

Gut Check

Ethan had an endoscopy today.  We were hoping the esophogitis might have gotten a little better.  No dice.  We have alleviated almost every allergen from his diet and stopped allergy shots.  But there is no change.  We will probably have to go back to Johns Hopkins for more tests.  Oh joy.
 
On other fronts, we are [...]

Nurse, Check

So the meeting at Ethan’s school was just with the nurse.  His new teacher was in training (how to inflict pain on children without leaving a mark).  The meeting with the nurse, the backup nurse and other people whose roles I cannot even imagine was to go over E’s health plan.  It all went well [...]

Moment of Truth

Today Jenn and I are meeting with Ethan’s new teacher and the school nurse.  I call this entry the moment of truth because I have found that people in general have one of two reactions when they hear the word incontinent.  Either they do the “oh, ok…no big deal” or you get the deer in [...]

Days of our lives

As I write this I am sitting out on the front porch (78 degrees!) watching Ethan play with the neighbor kids.  It has been a good day.Ethan filled up 4 cath charts today.  The deal was when if he did not complain and\or cath’d himself, he could buy a wii game.  So he wanted to [...]