Category: A Day in the Life

Dad Is Awesome

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There’s a little tune that Nanny Jen sings to Sol when he does something really well: “Solly is so great! Solly is so awesome!”

It’s simple, but effective: Solly gets excited when she sings it, and then her song gets stuck in my head for the rest of the day.

img_0925Today, though, we’re reworking that tune for someone else in our family: Mike, aka Dada. The truth is, as it is in many special needs families, Mike doesn’t get the credit he deserves. Most of the time readers hear about Solly, who works his tail off at everything he does, or about me since I’m the one who takes him to his doctors appointments, equipment fittings, and therapies, and deals with all the daily emotions of those appointments. But, in the background, there’s Mike (known to Solly and Bea as Dada), who, since the day he became the sole breadwinner of the household, has been working his tail off at the office, where his career has taken off, earning him a major promotion in the last year, all to make sure he takes care of his family.

But, his job isn’t why he’s so awesome. Here are just a handful of reasons why we love Dada and are celebrating him today on Father’s Day: Continue reading →

Head of Ring Security

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This past weekend, my eldest nephew, Reid, married his best friend, Katie. The wedding party included eleven beautiful bridesmaids, eleven handsome groomsmen, a very sweet flower girl, and Solly as the ring bearer.

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Solly and Reid

My heart soared when Reid and Katie asked Solly to be their ring bearer late last year, especially when I overheard Katie tell him: “Now, Solly, we don’t care how you get down the aisle. You can walk, you can ride in a wagon, you can be carried, we don’t care. We just want you to be a part of our day.” (How lucky are we that Katie is now a part of our family?!) And the inclusion didn’t stop there: every time anyone in their wedding party saw Solly at any of the wedding events and over the wedding weekend, it was “oh, hey Solly, how’s it going?” even though every single person who said hi to him knew it was very likely that Solly would just respond with a “hi” and a wave. This approach to including Solly is how I wish the world would include anyone with a physical or intellectual disability.  Continue reading →

I Like To Ride My Bicycle

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An evening ride

Spring is peeking through the gray clouds here in Nashville. After getting stuck inside for much of the winter, we’ve been itching to spend some time outdoors. Since it’s now quite warm in the middle of the day, we’ve been taking advantage of the cooler mornings and evenings to take walks with Solly on his tricycle.

Solly’s bike isn’t an ordinary bike: it’s an adaptive tricycle made by Amtryke. It has extra support to help keep him upright, a handle so we can help keep him moving, straps for both his hands and his feet, and handle bars that move to help teach his body reciprocal movement. Continue reading →

Our Stem Cell Therapy Experience

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I’ve struggled with this post. I’ve debated on how much medical detail I should go into on a topic that I truly don’t know that much about. I also worried about sharing too much because, as I’ve learned by participating in support groups on Facebook, stem cell therapy is still very much in a research phase and, as such, it is a polarizing topic. However, because we did our own research and have had wonderful results with our first round of stem cell therapy, it’s important to share our experience. Here it is.

I never thought stem cell therapy would be an option for Sol. When I was pregnant with him, we didn’t make the necessary arrangements ahead of time to bank his cord blood. Honestly, we had a perfectly healthy pregnancy, so there didn’t seem to be a need for it.

After Solly was born and we started seeking out less traditional treatments, I kept hearing about stem cells, not entirely knowing how it worked. When I found that an ongoing clinical trial at Duke University was only for children with cerebral palsy using stem cells from their own cord blood (here are some of the results from that trial), I put the entire idea on the back burner. Around the time that I was pregnant with Bea, I heard whispers that Duke’s next stem cell study for cerebral palsy would be testing sibling cord blood, so we arranged to bank Bea’s cord blood so we would be prepared when this treatment was available to us.

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Oh Mylanta!

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I’m snagging one of our beloved Nanny Jen’s favorite sayings for the title of this post. Any time Solly is being just a little bit crazy, Nanny Jen will say, with much flair and exasperation, “Solly, oh Mylanta!”

To say that the past two weeks have been insanely busy would be an understatement. In the last 14 days, we’ve recovered from colds, done a 3 day Anat Baniel Method intensive, wrapped up our second 40 dive treatment of HBOT, had two hippotherapy, one aquatic therapy, one feeding and one speech therapy appointments, got a new gait trainer, packed up our lives and flew to Los Angeles, started a 3 week intensive at NAPA Center, and had a stem cell infusion.

Whew. We are running on fumes (and lots of coffee).

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