Struggles

How can I possibly keep up with all of the important details of our lives? How do I know what is important? What do you want to read about? What do I want to write about? How come I feel badly when I haven't blogged in weeks?

This evening's struggle is about intervention. I've always considered myself a low-intervention sort of person. I believe in birth with little or no intervention when possible. Wearing makeup means Burts Bees chapstick, I drive an older vehicle, believe that wooden spoons and car keys are adequate toys for a baby. So how do I find myself in a place where I call a doctor every time River looks, moves, cries, breathes, eats differently than what we are used to? If there is a test that might improve his comfort or development I schedule it. A medicine that might improve his quality of life, I want it prescribed. I fight for the latest therapies and equipment. His medications number 9 or more, his doctors and therapists plentiful. How did I end up here?

This struggle has to do with his apnea... and what we can do, or should do as his parents. As the people who love him most, who want so much for him, yet also need out sanity. So does it make sense to have him hooked to a monitor which beeps loudly each time his oxygen levels drop? To which we jump out of bed to make sure that he is okay (which he is)? How about a huge oxygen concentrator which can be heard throughout the entire house? Not to forget his feeding tube which feeds him continuously throughout the night, and may need to be unhooked periodically to relieve the gas in his belly. Nothing about this feels normal.

How do I balance my desire for River to be well, with our needs for a decent night's sleep, with River's needs for some level of normalcy?

Sleep Study Pics

Here are a few pics from River's sleep study. He was sleeping when they started applying the leads.


And then he woke up to have all these wires attached including a sensor to detect whether he was breathing through his mouth or nose.


But River was a champ. He slept through the whole night until they woke him up at 6am. And of course that made him very unhappy!

chair pictures

Here are some recent pictures I took of River in his new chair. Each day he is getting more comfortable in it. In the first picture you can see his toy bar above the tray where we can hang fun, shiny, noisy toys. The chair is in the lowest setting here, at Eli level.


The chair is is in the highest setting here, and the toy bar is gone. The chair provides just enough hip, trunk, and lower body support so that River can use his energy on his vision and reaching.

Sleep Study Results

Whew, feels like a lot has been happening. We had the sleep study Sunday night which we've since learned did show some desaturations with shallow breathing, and intervention is recommended. Just when I thought we had all our ducks in a row, one of them gets out of line! And so we have another appointment. It starts with an ENT (ears, nose, throat) to see if taking out his tonsils and adenoids will be beneficial. If that' s not a possibility we'll explore the possibility of using a mask to sleep. Now that I know that he may not be getting enough oxygen at night, I am more nervous to sleep, especially when I hear his breathing pattern changing. Our appointment is in two weeks so I'll try to stay calm until then.

We also got River's chair on Monday. It's beautiful, and very intense looking all in one. It is taking some getting used to so we're introducing it to River for a short time each day.

And today we are on our way out of town to a conference at the Perkins School for the Blind called "Taking Care of Our Children... Taking Care of Ourselves." Perfect! I am very excited to attend this, as well as meet other parents of children with special needs. One of River's aunties is joining us for what should be a very informative presentation.

Pictures coming soon!