This week, Tess turns six. Her classmates sing happy birthday, we celebrate her at home, and I take a shopping trip that turns out to be awful in ways that I never expected.
Read More#42: Speaking In Tongues
This week, what happens when we go all in with communication. We finally pony up for a device that'll let Tess talk. What's she gonna say?
Read More#41: The Tess Army
This week, the Tess army. We're growing. We're everywhere. And we love the T-Bird dearly.
Read More#40: Don't Push This Button
This week, we're getting back into it with language. T has increasingly complex thoughts and wishes, and we gotta unlock those for her. Hitting it hard with signing, talking, and maybe even some AAC devices.
Read More#39: I Need Genetics For Dummies
This week, the next chapter in figuring out Tess's genetics. She's in the thick of it at kindergarten, we're moving forward with the crew at Baylor, and we have a mysterious plan B that's just getting underway.
Read More#38: These People Just Don't Get Tired
This week, part 2 of 2 about the Global Genes conference. I talk about the untiring advocates. Where they came from. What brought them here. And what makes them keep going.
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#37: Learning to Ruffle Feathers
This week, ruffling feathers. What that means. What we know we need to do now, to get stuff done and help Tess.
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#36: Are You With Us?
This week, what we did when we found our people: the researchers who study our kid's gene and disease, and the other kids who have USP7 issues. We're done, right? Search over? Nope. We have work to do.
Read More#35: We Find An Answer
This week, the next chapter of Tess's genetic journey. We finally, finally get some answers.
Read More#34: Kindergartener Tess
This week, Tess goes to kindergarten. I'll give you the lowdown on the final few days of August, and how things went on her first day.
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#33: Art Camp Is Dangerous
This week, the boy gets hurt in the last possible way we expected. And Tess soldiers on--taking steps, losing teeth, and chilling out more than ever before.
Read More#32: Surprises on the Genetic Trail
This week, the latest on Tess's genetics. What we've learned so far, who we've met, and where we go from here.
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#31: Kindergarten Transition, pt 2
This week, part two of the T-Bird's transition to kindergarten. We meet her special ed teacher, we start to relax about things a bit, and then that relaxation gets all messed up, when we get some news that's a total and complete curveball.
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#30: The Genetic Mystery Continues
This week, our next move in unpuzzling the genetics of Tess. We enroll with CrowdMed, to crowdsource it up. Will it give us some answers at last?
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#29: Alcatraz-Style Escapes
This week, safe sleeping for Tess. Have we finally found a solution?
Read More#28: The Dark Night of Uncertainty
This week, genetics. The mystery of Tess. Are we ready to give up?
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#27: Med Reckoning
This week, medication. Administering pills, liquids, ointments, whatever. To your kids. Is there a larger pain in the tookus?
Read More#26: Tooth or Consequences
This week, the milestones that don't get moved. That aren't delayed. The stuff that happens to your kid when they reach a certain age, no matter what.
Read More#25: Kindergarten Transition, pt 1
This week, the first episode in a series about the transition to kindergarten. Preschool is wrapping up. Our girl heads to the local public school in September. And we are sort of freaking out.
Read More#24: Summer Survival Guide, pt 2
This week, part 2 of my rules, helping stay-at-home parents rock out with the kids all summer. Happy kids, happy parents.
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