Intro
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Feeding Tube Accessories
Many children with medical complexity have feeding tubes and it definitely adds some complexity to their day-to-day lives. While Nikhil did not have a feeding tube, I wanted to share some feeding tube accessories that a trusted mom shared with me to post. She has been a tremendous resource throughout our journey so I trust her opinions on any product! Check out the links here: Clips for tubing: https://www.etsy.com/…/tubie-clip-mini-size-ng-tube-tube Bag for Pump: https://www.etsy.com/shop/PumpPackz Wall organizer for hanging up g-tube extensions: https://www.etsy.com/…/g-tube-extension-drying-rack… Flying Squirrel for hanging up pump: https://www.etsy.com/shop/QuirkyDad (what a genius idea) Drying rack/holder for syringes: https://www.etsy.com/listing/1268176920/large-syringe-stand Wheelchair Zip Up Sherpa Blanket: https://www.amazon.com/Gitzer…/dp/B08QYSHGL8/ref=sr_1_6… Bundle Bean wheelchair cover/blanket: “We use this one for warmer weather, it’s so…
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Have you been waiting to take your child on a plane? 18 Airports in the U.S. have accessible bathrooms with adult-sized changing tables!
If you are anything like us, the thought of a trip on an airplane was daunting. The truth is, Nikhil only made it onto a plane once, and he was nowhere near adult-size at that time he flew. You know how it is: like many public places, you just cannot past the bathroom situation and it feels paralyzing. How do you take your almost-adult-sized child to a bathroom where you can barely move the wheelchair around without getting yourself pinned to the bathroom wall let alone transfer him and lie him down to change him? For this exact reason and as long as Nikhil could fit lying down on the…
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The unimaginable
It has already been two months since the unimaginable happened. That is, our son, Nikhil, passed away at the age of 12 on October 6, 2021. What started out as a routine hospitalization for children like Nikhil turned into a horrible cascade of events. At some point during that month, my husband and I both felt a pain deep in our gut that was telling us that something was different about this hospitalization. During most hospitalizations, even lengthy ones, Nikhil showed signs of resilience which gave us hope. But this time, we kept hitting roadblocks to recovery and we saw something different in his eyes. We painfully watched his condition…
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Welcome, parents!
This website was created to help parents of special needs children with their everyday lives and navigating their way on a road that is less traveled. As a mom of a medically fragile child, I’ve spent hours and hours researching services, products, etc and I’d like to share all of that with you. Even if some of my tips will save you a minute of stress in your day, that is an extra minute you can spend with your precious child.