Rowan’s Mountain of Supplies
In support of
Rowan Wallace and Family
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Rowan Wallace and Family
Happy Wednesday!
Yesterday, we made it halfway to his fundraising goal! You all are incredible. Here’s today’s update:
We packed up for our trip home from North Carolina last night and both Reece and I found ourselves laughing at the pile of Rowan’s stuff piled up against the wall. We realized it was the perfect next update to share. Not every child with disabilities is immobile like Rowan, but most require a lot of additional equipment, often durable medical equipment (DME) or other special supplies to accommodate the child. So along with using the ramp from a handicap accessible vehicle to push Rowan in his stroller, it will also help us load his other supplies. Here is a list of what we currently travel with:
- Wheelchair/stroller
- Walker/gait trainer
- Tobii Dynavox for communication and the stand to hold it at the appropriate position – such an incredible device. He stares at what he wants to select and this will open up a folder to other options. For example, his favorite images to select are I -> Actions -> Watch -> Cars
- iPad for games – Rowan has cortical vision impairment meaning he struggles to interpret images the same way that we do, so he prefers high-contrast, lit, 3D images that move because they are easier to see. This is also why he loves to reach for long hair and touch fluttering eyelids! He also can only effectively use his right arm and there are games available that allow him to actively participate. Allowing this screen time has been difficult for my mom brain, but I’m also grateful for these resources that allow Rowan to participate, learn, and engage in ways that stationary objects just can’t provide.
- Leg braces – these help to prevent contractures and keep his feet developing in the proper position. We also travel with leg and left arm immobilizers that are basically pillows that wrap around his knees to help maintain flexibility. Lastly, he has a hand brace for his left hand as well. This is a great example of where parents have to use their best judgement on what all to have their child wear because it’s a balance of quality of life and prevention of long-term issues.
- Hip brace – this isn’t included in the video but Rowan now has to wear a large hip brace at night since his surgery to keep his hips aligned and avoid the crisscrossing of his legs that was occurring before the surgery due to the tightness that his spasticity caused.
- Blowup bed – Rowan likes to roll off of mattresses, so we bought an inflatable bed that has a cover for it to prevent him from rolling out.
- Cochlear implant supplies – oh goodness. These are a bear. Thank goodness Reece is tech savvy because you have to charge the batteries every night, which are often easy to lose, and try to keep Rowan from knocking them off all of the time. We use toupee tape to accomplish this, but understandably, Rowan still struggles with adapting to these since he was born deaf and honestly just prefers the silence. Having his cochlears on causes a lot of overstimulation. He’s learned to appreciate them as he gets all his external communication by hearing through these, and he sure loves to dance and listen to music.
- Go-to seat – this awesome chair can be buckled onto to other chairs and also stands alone and allows for him to feed and play in it. We also have a water version as well.
- Diaper bag
- Cooler for his bottles and medicine
As you can see, it’s a long list! There’s a lot of anxiety involved in forgetting something, but we try our best to not let it inhibit us. We are grateful for the resources that we have that allow us to afford these because these are certainly expenses that no one anticipates. They enable Rowan to more actively engage in the world around him, so we will happily (and sometimes unhappily haha) caravan them around with us wherever we go! On the plus side, Rowan’s siblings have learned young how to load and unload a car…
Love,
Wallace’s
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