Seven months of peace

It's been a while. I don't know if anyone checks this blog anymore, but I thought an update was due anyway.

We had a wonderful winter and spring. The baby grew as expected, and is now the busiest little boy I have ever met. He doesn't seem to have a fifth gear, but he spends almost all of his time in fourth. He spends most of his time exploring outdoors. Summer hiking season is coming,  and G is ready.

Today marks two months outside of all medical settings. This is huge. We had been averaging four or five appointments and ER trips per month over the winter, including monthly shots to boost immunity against the nasty cold, RSV. The time away from doctors and nurses has been wonderful for G. His anxiety has decreased. He is happy to be babysat by his grandparents, whereas he wouldn't even let them hold him in the past. He waves at the neighbours and plays with other children. We will see how he does in a few days, after his next ECHO and immunizations.

I am healing emotionally as well. I feel much more at peace with our lives now. It's easy to do, because this is a peaceful time. G has no scheduled procedures, he is growing and developing well, and he isn't currently on medication. We are enjoying this period of normalcy, because we know that this won't last forever. Eventually, his heart won't be able to keep up and something will need to be done. While these easy moments last, we are cherishing them.

There are a few questions we hope to answer at the ECHO on Thursday. Are the small, underdeveloped pulmonary arteries catching up on their growth, or will an intervention be necessary? How is the heart coping with the leaky valves? Is the pulmonary valve narrowing again, or growing like we hoped? Can we go back to ignoring this heart defect for a few more months, or do we need to be ever vigilant?

G is doing well. My husband and I discuss and rationalize and agree that everything will look good on the ECHO. Yet we live with the real fear that we will be blindsided with bad news again. In 36 hours it will be done, but until then we wait with baited breath.

G doesn't know our fear, and for that I am thankful. His biggest issue tomorrow will probably be convincing me that we need to go back to the park for a fifth time and that he should be able to eat chicken soup for all of his meals and snacks.

I will try to update after our consult on Thursday. If I am slow to get around to it, we probably got good news. I usually write when my heart hurts, and play when times are good.