PRAISE! So, the 3 specific gene tests run on two different disorders came back normal. So, that is great, however, it puts us back at square one of another round of tests…

I had a really good talk with the geneticist and resident today. I actually confronted the one about the “A” word (autopsy) because the doc had used it on two different occasions, saying if we didn’t find out what was wrong with Noah, we’d find it out in an autopsy. Well, I informed the doc that we weren’t having an autopsy and also that that word is a bit raw to use with parents. I also asked if that meant they were giving up on Noah, stating that I need to be assured that they are busting their butts to find answers. The doc understood where the “A” word could have come across that way, but assured me that they have spent a lot of time and will continue to do so to try to find answers. On Monday Noah will have an evoked auditory test and an evoked visual test to learn more about his peripheral nerves.

SOOO, I’ll keep reaching for the hem of His garment, I’ll eat the crumbs from the table, I’m going to keep praying and praying and praying…thanks for doing the same.

Well, Em just came to see “brudder”. She loves him so much, it’s sooo cute! Ciao!



2 Responses

  1. I don’t blame you! I would be VERY angry if the doctors working to help my child kept assuming or saying that an autopsy was in my childs future!! I don’t blame your anger or confrontation at all. They absolutely should be doing everything they can to prevent his death, not plan for it!
    -Cassandra Felt

  2. I’m so sorry. I’m reading Noah’s story only today, but reading this date’s post hit me so hard. I’m so sorry that word was ever spoken to you, even once.

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