John’s Birthday Video
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Services for John
Kelly, William and I want to thank everyone who has so generously loved us for not just the last day or so, but for the last seven months. And we are certain there will plenty of more love to be thankful for as the days pass. I guess we won’t know just how much impact [...]
John Has Gone Home
Our little boy John passed away this morning. He had just finished another of his long periods of seizures Saturday afternoon and was sleeping soundly as he usually did in such cases. Then last evening he started to have a hard time keeping his oxygen levels high. His nurse was watching him at the time, [...]
Finally Asleep
John finally went to sleep around 11 p.m. last night. He woke up once during the night, but is soundly sleeping now. So the seizures seem to have come to an end.
We worked with one of the neurologists yesterday to figure out what dosage of seizure medication—some of which are sedatives—we could give John without [...]
Seizure Activity
After a week in which John had very few seizures of significant duration, he is now undergoing a burst of seizure activity that has been ongoing for almost 24 hours.
The visible seizures are mixed in with brief periods where he is awake and seizure activity is not apparent and spots where he is asleep. Then [...]
Boy’s Night Out
One of the nice things about living in the Clarksville area of Austin is that we are surrounded by things to do. Town Lake and its parks and running trails are about ½ mile away, restaurants and shops even less. In fact, we have some of those right in the middle of our neighborhood. We [...]
A Better Day
When we wrote on Monday, John was having a rough time. So it is nice to report this evening that John has been doing much better this week. On Tuesday, Wednesday, and Thursday, John only had two seizures that required an extra dose of medication—and each time, one does did it. So after having had [...]
Remarkable
Remarkable is how our neurologist described John tonight. Remarkable that he can tolerate so much medicine. Remarkable that he can tolerate these extended seizures. Remarkable that he is still hanging in there.
Yet, here he is with us, tonight, on his 6 month birthday (we wrote this last night, on Monday). Kelly wrote about some time [...]
A Long Night
John’s seizures continued into the night. When we went to sleep last night, he was still having them. Though because he was heavily medicated, they are greatly subdued. This morning, we’ve still seen some activity, though we’ve cut back on the additional medication. Just not sure more will do much good.
A Few Things
We haven’t written in a while because there is not all that much new to report. But a few things spring to mind over the last couple of weeks.
Last weekend we went to Fredericksburg to visit Kelly’s parents. It was the first time we have spent the night anywhere except for our home or a [...]