Friday, January 20, 2012

It's Been a Whole Year?!

My name is Marriah, I'm twenty-one months old, and I have a broken heart... sort of.

When I first started my journey in life, I had a very broken heart. With Severe Hypoplastic Right Heart Syndrome, Critical Pulmanory Stenosis, and a Ventrical Septal Defect, I had a lot of challenges to overcome in my first few days of life.

Over the most critical part of my heart-growth and development, daddy posted those old blogs, as a coping mechanism and to keep people who were interested in the ongoing progress. Then, suddenly, the blogs petered out, around a year ago.

The main  reason, is that my condition had improved to the point where frequent updates were no longer needed. Well, now I'm happy to report that my heart has improved to the point where updates will be very rare indeed. I still have the DA Stent, and the DA is slowly occluding. The Doctor is letting this happen intentionally and naturally, so my heart can slowly grow into, and adjust to being a two-sided heart.

I've been going to regular appointments with the Doctor at Children's, and he has declared that my syndrome has improved so much that he characterises it as Mild Hypoplastic Right Heart Syndrome. Kids with Mild HRHS, rarely need open heart sergery, and only occasionally need catheder procedures as we get older. The current forecast, subject to change, is that I might need a catheder procedure to patch the Ventral Septal Defect, and a pulmanory valve replacement.

Mommy brought video of me playing "soccer" around the house, which just happens to be the Doctor's favorite sport. When he saw that, he smiled from ear to ear. Some of the nurses come and say hello, even if they aren't involved in my doctor visit that day.

This whole year has been pretty eventful. Daddy got a new job and we all moved from our large house in central washington to a large apartment in western washington. And by "large apartment" I mean that it's large by apartment standards, but much smaller than the house was.

Mommy had a hard-time adjusting, at first; but because of Daddy's job, mommy gets to be a full time mommy. This makes me very happy, even though my wilfulness is often difficult for any one person to contain. Occasionally, I go to day-care for a couple hours at a time. I fuss a bit when dropped off at first, but within a few minutes I get involved with the other toddlers and have lots of fun.

It may be a long wait until daddy writes for me again, since, as far as anyone needs to know, I'm a regular toddler with a mild heart condition that, for all intents and purposes, requires just a little more watchfulness for signs of trouble than any other child my age. Even so, any trouble signs for me at this point are the same kinds of trouble signs for perfectly healthy kids my age. And, any conditions that are worrisome aren't likely to advance any faster than a like aged healthy child.

So keep sending your good wishes; although my heart started out broken, it hasn't slowed me down at all...

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