I often get emails asking how Parker’s Teeny Tiny Designer Hiney is faring.

Except for the astronomical price tag attached, Parker’s tush is no different than that of any other kid.

Yes, we still have a long road before potty training will be achieved. But, compared to a life of ostomy bags, we are truly quite blessed.


Tonight finds me rushing around grabbing all of the stuff that needs to be gathered before we venture to any doctor visit. Trust me, if I waited until morning to do all of this accumulating, we’d never make it out of here.

Which reminds me, I need to throw Parker’s medical binder onto the pile. Parker’s medical history is too long for even the best memory to retain. I learned long ago to make lots of copies listing meds along with their strengths and doses. The settings on the vent. How much he gets fed a day and when. Calendars chronicling last time we changed out his g-tube; the bundles of tubing and connections.

This kid. He’s quite the medical diva I tell ya.

My stomach is in knots. The morning’s visit is to the Cardiologist. The ehco and ekg are scheduled and the potential outcomes are causing my own heart to feel faint.

Pulmonary Hypertension isn’t known for it’s forgiving nature. And when these appointments come I can’t help but ask if this will be the trip when we discover that the meds are no longer working. Or the vent is no longer making it’s difference.

I understand that only a handful of children become adults and live decent life spans while living with PH. A very lucky few.


It’s times like these that I need my faith the most. It’s only by faith that I allow myself to ponder on the miracle that Parker truly is. The reality that he is still here even when many didn’t believe it possible.

That maybe, just maybe, he’s destined to among that handful. That very, very lucky few.

And your prayers? They mean the world.


  1. My name is Sarah Apr 6, 09
  2. Carol Apr 7, 09
  3. Suzi Searles Apr 7, 09
  4. Laurie Apr 7, 09
  5. René Apr 7, 09
  6. Pauline Apr 7, 09
  7. Michelle Apr 7, 09
  8. Jennifer from NY Apr 7, 09
  9. Barbara
    Apr 7, 09
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