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, [...]

A Day In the Life

Yesterday.  Woof! 
 
Yesterday was a mess.  It started at about 12:45am.  Ethan had a bad asthma attack.  He came into our room and was barking.  I went to get his nebulizer, but he did not sound too bad.  By the time I got back to our room, Ethan was having a full on panic attack [...]

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 [...]

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 [...]

Put on a happy face

 
Jenn told me something last night that almost made me cry.  While she was giving Ethan his enema, he asked if he “tried” real hard could he stop having the enema and catheterizations.  Sadly, I think it is finally dawning on him that his life is not exactly like his friends. 
 
On another front we [...]

One Step Forward, Two Steps Back

Well today was the big day.  Today we started cathing.  Like many unpleasant things in life, the dread of the thing was worse than the thing itself.  One thing became abundantly clear as we began, we are extremely lucky.  Because Ethan is older, we were able to reason/bribe him.  While he does not “like” the [...]

Just a moment

On a whim, I bought tickets to the National Symphony Orchestra.  We needed something to break the cloud of sadness that currently surrounds our house.  I really wish when they told us that we needed to begin cathing, that we just would have started right then.  The dread almost seems worse than the task itself.  [...]