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, […]

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 […]

Paging Dr. Jellyfinger

This morning I had my annual (mmm…well…bi-decade) physical. Since I am over 40, I had a visit from Dr. Jellyfinger. My doctor and I are friends, so I sang “Getting to know you” during the deed. Considering the awful things I have had to do to Ethan over the years. I decided 30 seconds of […]

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 […]

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 […]

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 […]

Cathy

So I am in an angry troll kind of mood. Ethan had his second urodynamics test today, but I could not go because we had an emergency at work (it is 7:15pm as I write this…I am still at work…waiting for customer confirmation). The Urodynamics test is by far the most invasive test […]

Specialist Buffet

This week we have our Spina Bifida clinic appointment (they accept VACTERL patients too). He sees 5 specialists all at once. It is bound to be a multi-dread week. First of all, the only appointment we could get was on Jenn’s birthday, ugh. Two and three are more serious matters. They took hip x-rays […]

Sermon on VACTERL

This is an old posting from my yahoo 360 blog…it is old and tired, but I want to save a copy so I am putting it here. OK, I am ready for my Miracle Genesis 40:5-15 Each of the two men-the cupbearer and the baker of the king of Egypt, who were being […]