Category: Personal News

Thanks so much to all who have been praying! I’m at the hospital now — they have wireless access! My son is doing quite well. It’s pretty pathetic to see him with all those electrodes stuck on his head. He’s wearing one of those little knit caps they put on newborns, but it has a long sock-like appendage with a bunch of wires trailing out of it. There’s a video cam on the wall, and the video image synchs with real-time EEG output on a monitor. Every time the brain waves spike unusually, the system beeps and places a marker for later review. What a surreal experience.

We’re amazed that our little guy is tolerating all those wires as well as the forced confinement to a hospital room. Thankfully, my father-in-law, whom my son adores, has been hanging around the room as well. Thank you for continuing to pray.

Some encouraging news… The device they are using today for the video EEG beeps whenever my son’s brain activity goes haywire. The epileptologist has been monitoring the beeping (it happens, for example, when he’s semi-awake and watching TV). The doctor thinks that with some adjustments to the meds, my son’s EEG will be normal by the time he leaves the hospital on Wednesday. That would be such an amazing blessing! It’s incredible that tweaking dosages on meds over the course of a few days could have that effect. We’ll see….

Today my youngest son is in the hospital on a 72-hour stint hooked up to electrodes for a “video EEG.” This isn’t a painful procedure, but it’s stressful for him and us. Please keep us all in your prayers.

Today we took the little guy for an Auditory Brainstem Response (“ABR”) test. This test measures whether sound that enters the ear is properly stimulating the auditory nerve. It requires sedation, which is always a bit disconcerting. He did fine, though. The test was negative — there is no problem with his auditory nerve or hearing. This is a good thing, but also in a way disappointing. If that were “the problem,” there are implants that can help correct it. Next week we go for an extended speech evaluation, and then in a few weeks we go for the 72-hour video EEG and start the new meds. Keep us in your prayers.

Today was a visit to a pediatric epileptolgist. After reviewing the EEGs and asking a bunch of questions, he said he’s certain that our son’s abnormal brain activity in the frontal lobe is directly affecting his speech and language. It was interesting because after observing our son for a brief while he noticed occasional eye flutters and stares that we’d never picked up on. Apparently the little guy is constantly experiencing “brain noise.” I wonder what he hears. Are we sometimes like the adults on the old Charlie Brown specials — “whah whah whah-whah-whah”? The good news is that this doctor gave us some new meds that have an excellent track record with this sort of thing. We’re gaurdedly optimistic that this will move towards some improvement.

And this past week I experienced something I believe is straight from God. I attended a really boring and useless conference at Columbia University on grant writing. I “just happened” to meet there a faculty member in Columbia’s childhood speech and language program. She gave an introduction to the Director and hopefully we’ll get our son in there for evaluation. The doctor we saw today said Columbia’s program is excellent.