Some Good Nights, Some Bad Nights

I must remember how it used to be.

He and I would walk up and down our long driveway, singing, by the hour...in the wee hours.
We would sit in the dark kitchen, trying not to disturb the rest of the slumbering household. I would rock him in a chair, restraining his flailing limbs, and body pushing into extension.

If I had an hour or two of uninterrupted sleep, it was a "good" night. The total time of night-napping was only a few hours in twenty-four. This went on for years.

God IS my strength! His grace IS sufficient!

Slowly, but surely, this situation has changed. Almost imperceptibly Ethan's sleeping habits have gradually improved. Calcium, melatonin, and occasional chamomile tea and baths infused with lavendar, have helped some. While I still sleep with "one eye open" and spring to his bedside many times a night, most nights we stay in sleepy mode. He is no longer wide awake for hours. And, when he is, he is usually cheerful...rather, in a party mood. I read once (somewhere) that cerebral palsy patients often require less sleep than most folks. This seems to be the case with Ethan, at least. He is often not ready to curl up in his bed until midnight or later. His sleep is restless, as though plagued by dreams. Daytime naps are rare and brief.

Another circumstance for which I am particularly thankful is the absence of seizures. Generally speaking, his 2-3 hour-long sessions of grand mal seizures would typically occur at night. This has not been the case for a good long while! I no longer go to bed with that dark cloud hanging fearfully over us.

All in all, our good nights are better and our bad nights aren't as bad as they used to be.

Therapy Sabbatical

For a variety of reasons, not the least of which is financial, we have postponed Ethan's therapy in Ft. Worth and Waco , indefinitely.

Ethan has had therapy at Pediatric Therapy Associates every week for about 10 years. For about 6 months, we added a weekly trip to Camp Hope Therapy Team. His bank account finally gave out, as well as the energy level of his Mama. With the addition of an AmTryke and a better stander, he will not go without exercise. We have been given such excellent instruction over the years with which to work with him at home.

Mid-April brought some difficulties in his well-being that yet remain a mystery. He seemed to be in a great deal of pain, as though he had a pinched nerve. Over about 8 weeks' time Ethan experienced various trials, including an illness and a 2-week "hunger strike" in which he lost 6 pounds. He saw a number of medical professionals and therapists to determine the cause(s) of his troubles; but, there were no clear answers. We even had a delinquent baby tooth extracted, in case its close association with the nerves was causing his unwillingness to eat. We did everything we could think of to eliminate any potential causes. All these things resolved themselves with time, thankfully, and he is better than ever, with no hint at the previous problems.

June brought a string of days over 100*, and our house temperature was only about 10* below the outside temperatures. We are blaming the heat for his breakthrough seizure session. It was the first in a year, much milder and of shorter duration than his normal sessions. Since then, I have kept him in the cooler bedroom on the really hot days, and he has withstood the warmth just fine. We are looking forward to weather that allows us to be out and about, though.

Besides his new (used) stander and his new AmTryke, he also has a toilet-chair, which is particularly safe, secure and comfortable. He can take his time, without the process taking its' toll on my back.

Just yesterday, we joined Charlotte's family at a friends' swimming pool for a couple of hours. Ethan has always loved the water. It was good "therapy" for all of us. He sure slept better last night!