This is a helpful video for understanding Naomi’s condition. Some of the folks in the video have it far worse than us. The video talks about developmental difficulties. As we continue to work on controlling Naomi’s seizures we will be starting behavioral and speech therapy. Many of the children with TSC display various disabilities including autism. You can support the advocacy group here: TS Alliance. As always, your prayers are welcome.
YouTube - Infantile Spasms and TSC: A Devastating Diagnosis.
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From our the brothers in Novosibirsk:
Peace to you, dear Brothers and Sisters in Christ,
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I recently produced for the seminary a compilation of Kantorei selections from their albums and live recordings I recorded while a student. It will be broadcast on Christmas eve here in Fort Wayne and will be streamed live for those outside the area. Listen Christmas Eve from 9-10 pm Eastern here: WBNI live streaming
LOCAL RADIO TO FEATURE CTS CHOIRS ON CHRISTMAS EVE
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Many of you know we scheduled a follow up appointment for Naomi at Riley Children’s Hospital in Indianapolis for today. We are home from the visit. I’ll summarize: the neuro-geneticist we met with is one of two there who specialize in TS (tuberous sclerosis http://www.ninds.nih.gov/disorders/tuberous_sclerosis/tuberous_sclerosis.htm). He went through the same Q&A as our neurologist at Lutheran in Fort Wayne. The diagnosis was confirmed. As well, Elsie and Ethan show two symptoms. While this is not enough for a diagnosis, he recommended they follow the same screening as Naomi. Also, he diagnosed me as the carrier (its a dominant genetic disease). In some cases, there is no family history and the mutation can be traced to a particular paternal occurrence, namely, me. Therefore, as I exhibited three (or more?) of the symptoms, he ordered the same screening.
Specifically, she will need yearly MRI, Renal Ultrasound, and ophthalmologist exams. He didn’t order an EKG since she didn’t demonstrate any heart issues although this is recommended. TS (tuberous sclerosis) is a multi-system genetic disease that can result in benign tumors in kidney, heart, and brain. Basically, you screen and do surgery if needed.
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Many of fellow seminarians as well as pastors I know have been wrestling with the question: to social media or not? I embraced Twitter early, was a Facebook user when it went public, and have been blogging for four years. Last weekend someone asked me if I will continue when ordained. I’m not sure. A campus pastor will use Facebook and Twitter out of necessity as a basic form of communication like the phone or email. On the other hand, a rural parish pastor probably can’t justify spending extensive time on the social network sites when neither his flock or potential flock are there. Then again, I appreciate that those tools are networks that allow pastors to remain connected to fellow pastors outside their immediate geography. But they are no substitute for real conversation, person-to-person, flesh-to-flesh. Disembodied speech is about as important as those pesky ghosts in Scrouge’s mind. They might motivate to remedy relationships or simply encourage one to take anti-psychotic medication.
For the time being, I’m seeking a different balance. Twitter has been mostly a time wasting venture. Occasionally it is good for a laugh or a link. But by and large its worth is questionable. Secondly, much of the useful information is duplicated onto Facebook or into your favorite RSS reader. I wouldn’t use Facebook if my family, friends, and colleagues didn’t. That said, a daily five-minute perusal is usually all that is necessary.
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Concordia Theological Seminary in Fort Wayne and Concordia Seminary in St. Louis have received a gift of $2.48 million from a Texas donor.
Seminary officials say it’s the largest estate gift from a single donor. Thelma O. Pietsch designated the funds to establish a permanent student financial aid endowment at each institution.
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Apologies for my delinquency on getting this out.
Newsletter Oct 2009 PDF format with pretty pictures
October 28, 2009
Greetings in the name of Christ,
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