See Kai run

Seeing Kai run with abandon has been one of my happiest moments. This recent video taken on Lake Michigan brings to life a vision I held of him during those difficult months prior to surgery.

8 week check-up

I haven't written in a while because, for the most part, life has returned to normal and our thoughts (thankfully) revolve less and less around the initial intention of this blog (kai's heart) and more around everything else.

Kai had a great time camping up in the Upper Peninsula last week with Sue and I. He's been enjoying the company of his 6-year-old cousin, Daniel (who just arrived from Germany), following him around like an eager puppy. And yesterday Kai joined his friends in running naked through the garden. He's been having a great summer.

Today, we went in for the post-op meeting with the cardiologist. He had a routine ekg ("the stickers they put on my tummy instead of the ones I put on the wall") and then we waited for over an hour playing tic-tac-toe, I spy something and other guessing games. Finally Dr. Armstrong arrived. She could easily find Kai's pulse in the leg (something that was hardly discernible before the operation) and said that his blood pressure differential between upper and lower body was now good enough to lower his daily dosage of blood pressure medication. Yeah!

She could still hear a slight murmur which is related to a slight narrowing of the aortic valve (something they knew about before the operation and not related to the coarctation). Chris and I were both not too sharp on our toes today, so didn't follow up with a question, but this narrowing is probably related to Kai's bicuspid valve (most of us have a tricuspid valve). In any case, this is something that can't be fixed right now, but will probably require replacement later in life. There have been some major advancements in the field of aortic valve replacement in recent years, so the procedure might look quite different in 10 to 20 years. It will likely involve a relatively non-invasive catheterization. For now, we just have to wait and see how things progress.

We'd heard about minor issues with the left ventrical before surgery. Dr Armstrong clarified that there is a mild thickening of the muscle (related to his elevated blood pressure prior to surgery) which will not improve over time, but may worsen.

Some of the questions about exercise limitations will be answered over time. Whether he will have to avoid activities like rowing or weight-lifting depends on the condition of Kai's heart within the years to come. There is a slight chance of recoarctation (3-5%), life-long hypertension (requiring medication) is a possibility, and valve replacement is a probability.

So, while the news of Kai's immediate condition post surgery was good and reassuring, we left reminded that this is the beginning of a life-long relationship with our cardiologist.

a few anecdotes

The other day, Kai woke up singing a poem that just came to him ("I made it up in my head"):

Morning, morning

the light is shining

it grows and grows

then there comes

the great big sun

Bama (Kai's stuffed dog) still plays a central role in his life. He often asks "Bama, do you need anything?" and Bama answers in a high squeeky voice. Sometimes Kai translates how Bama is feeling "Bama is sad today, Bama wants to be alone." And when we've stayed out too long, Kai lets us know that Bama misses him and wants him to come home.

When we put a swimsuit on to go out to the lake, Kai called himself a "swimoutsider."

He is full of questions these days. Yesterday he asked what ankles are for. When I answered that they help connect our legs and feet, he asked why we have toes and how our legs are connected. Pretty soon his questions will surpass my ability to answer them.

In case you didn't know, underpants can make a cute hat (see photo)