9/1/21 *Important Update

There is much to update you all on but I would like to start with something we’ve been waiting to share, something that has mattered tremendously to us all.

When Kevin was first in the ICU, he was still able to move his arms in a limited way. A week or so in, the movement completely halted.

About two weeks ago, he suddenly found that he could move his arms a bit again. Since then, he has slowly gained some more control. After his baclofen surgery and the reduction of his seizures, he has been working on his arm movements in therapy.

This is tremendous news for so many reasons. It gives us hope that he may be able to use a chair with hand control rather than his mouth, granting greater independence. It also opens the door to the outpatient program at Craig, something we hoped for so he will get more time with the resources here. I, of course, am beside myself with the knowledge that our shared goal of getting a hug from him feels achievable.

We ask you to join us in acknowledging this hope as both remarkable and fragile. We are beyond excited, but all holding our breath to see what may come as he continues to push himself and discovers what may be within reach.

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Last week, Erickson and I stayed with Kevin Thursday through Sunday. I didn’t think I could have any more respect and pride for what Kevin and Mom do in a day, every day, but somehow that respect and pride grew.

Some of our highlights were watching Kevin do 4 miles on the FES bike, challenging his arms in occupational therapy, easily maneuvering into a modified van and being freed of his trach AND neck brace!

We also made time for burgers, guitar, movies and friends over the weekend. Kevin got visits from family and friends – including his friends Christian and Seth. I have to give an extra thank you to Seth for showing up even after a flat tire on his way!

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The coming weekend should be a good one as I am celebrating my birthday with Kevin on Friday and Dad flies in on Labor Day!

Thank you all for the thoughts given, time spent and strength lent.

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Kevin’s Donation Fund:

If you wish to make a donation to Kevin’s fund to assist with the cost of a power chair, beach powerchair, new adaptive vehicle, assistive home features, medications and other tools for his life ahead please select Kevin’s name on the drop down menu at the link below: https://secure.qgiv.com/for/t4f