cerebral palsy

Could This Tiny Packet Change My Daughter’s Life?

October 14, 2014

Strictly speaking: No, because it’s a sample. But packets like it – filled with real blood, not just a demo fluid made to look like it – do have the power to positively impact children with cerebral palsy, autism, diabetes, and other health conditions that have no cure and few treatment options. My recent trip […]

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Sorta-Confessions of a CP Parent

October 2, 2014

A couple of years ago, Sarah wrote a post, Confessions From a CP Adult, that I saved to my “Post Ideas” notebook in Evernote. I have dozens of ideas, going back over three years, in that notebook, most of which I will never use. But I re-read Sarah’s post recently and in light of the fact […]

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Freedom Is Still a Little Ways Off

July 22, 2014

On Sunday morning, we resolved to put Sarah Kate on her bike. Her therapists have been advocating it for a little while, but the last time we tried ended in frustration – mine and hers. I hoped things would go better this go ’round. They did. Sort of. It started with me taking her out, […]

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Let’s Talk About Therapy. And Spiders. And Russian Astronauts.

July 8, 2014

Spider cage. Thera-Suit. Adeli Suit. UEU. Familiar terms to us, but probably not so much to most people, so how about a quick primer today? Sarah Kate began an “intensive burst” of therapy on Monday – four hours per day for five days. In the past, she’s done several full courses of intensive therapy: four […]

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How Things Are Really Going

July 3, 2014

No matter where I go these days (which, admittedly, isn’t that many places) or who I talk to, the question I always get is “How are things going?” What people mean, of course, is how is Sarah Kate doing – has she recovered from the surgery, is she progressing in therapy, and so on. I […]

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It’s Here! Sarah Kate Shares With the World #WhyIRunDisney

June 23, 2014

Remember that day when Sarah Kate was The Most Awesome Kid in the World? And remember when the runDisney folks took notice and decided they wanted to share with the rest of the world (you know, all of those folks who weren’t there on that glorious day) how awesome she was? Well, runDisney decided that the […]

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Rehab? … No! No! No!

May 28, 2014

That’s me channeling my inner Amy Winehouse, not Sarah Kate… Seriously, people…this summer may do me in. We started the day with speech therapy for Nathan. I dropped him off, ran two super-quick errands, then went back to the house to load up Sarah Kate to drive over to Mobile for physical therapy. Today was a […]

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My Stand-Up Girl

May 21, 2014

Can you see it? The look of terror on her face? The defensive posture? The stress in the raised eyebrows? Tuesday was Botox day. And stand-for-the-first-time-in-six-weeks day. She survived them both. We saw Dr. Mendoza, the rehab doctor, Lisa, the physical therapist, and Dr. Doyle, the orthopedic surgeon, for her six week surgery follow-up and the […]

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Our Experience with Selective Dorsal Rhizotomy

May 15, 2014

I received an email earlier this week from a mom who wanted more information about selective dorsal rhizotomy (SDR), and specifically about Dr. Oakes, the neurosurgeon who did it. I’ve mentioned several times that she had SDR when she was three, but because I wasn’t blogging then I haven’t provided a lot of detail. Since […]

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Casts Away!

May 8, 2014

On the road again… Unlike the legendary Willie Nelson, I’m not enjoying these road trips very much, and we certainly aren’t going places that we’ve never been. But On the Road Again is our life right now, and will be for awhile longer. (Note: Nathan is using a booster, it’s just not obvious because they […]

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