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). […]

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, […]

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 […]

Milestones

So we have been doing intermittent catheterization for about two weeks now. It is just part of the routine, no complaints. Every time he completes cathing without kvetching, he gets a sticker towards buying a new video game. Last week he asked how he could earn more stickers. Jenn said he could cath himself. And […]

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 […]

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. […]

Blur II

I titled this entry Blur too, but for an entirely different reason. This morning a Ugandan Children’s choir visited our church. The singing and dancing were almost breathtaking. Their choreography was so rapid that literally they were a blur at times. And while they were dancing they were singing too. Only children could move and […]