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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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Chain or Independent? Why I Made The Switch.
For so many years, I used the nearest chain retail pharmacy for our son’s medications…..until I didn’t. There are so many GREAT reasons to use a chain pharmacy for your child with medical complexities. With all these perks, why did I leave for the small, independent pharmacy? FIRST, I was in a position to go to the pharmacy without our son. I did this while he was with the nurse and/or at school. That was honestly the biggest factor that ALLOWED my switch. If I didn’t have reliable care for him, I would not have been able to make the switch. What else happened? When you’re a frequent user of…
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Backpacks for your wheelchair user!
I wanted to share some links for adaptive backpacks. I haven’t personally used these, so I would love some comments if you have! JANSPORT ADAPTIVE BACKPACKS TARGET ADAPTIVE BACKPACKS
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What you need to know about Medicaid before relocating to a new state with your medically-complex child
It seems pretty simple, right? You have a whole list of medical and support services your child uses (which took you forever to get approved and scheduled). If you need to relocate, your services should “transfer” to the new state, right? It turns out that it is NOT that simple and you need to be informed prior to relocating. If your child requires services that are part of a state-funded program you should be aware that programs can vary. Many families utilize services that are part of a state Medicaid Waiver program. This means that the standard income requirements to qualify for state Medicaid are “waived” and our children can…
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Finally, a one-stop-shop!
What would you give to avoid spending hours and hours online researching all the different supports you need for your child? What if someone did it for you and you could even connect with other parents of children with similar needs to your own child? Well, it turns out that you don’t need to give anything!! After her journey of seeking out resources for her own child, Caroline decided to help other families by creating a platform called MyConnect. After signing up at no cost, you will have access to a wide array of resources that range anywhere from specialty doctors to special needs attorneys in the Westchester County, NY…
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From syringes to socks…..
Our children just have SO MUCH STUFF. From medications to medication supplies, oxygen to oxygen supplies, tube-feeding formula to tube-feeding supplies, the list just keeps going. It can be quite overwhelming, and can overtake our homes to the point we feel we are living in a hospital. But keeping everything organized is just not that simple. You KNOW what I mean. You know that eating one meal might require an adaptive plate, an adaptive utensil, a bib, something to prop up the elbow, a special drinking cup, a communication device, etc., etc. The hardest part is that our kids need so many different supplies throughout the day just to live…
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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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These moments
When you’re parenting a child with so many needs it’s easy to get caught up in the weeds of the day-day challenges. We often become stuck in our routine of therapy appointments and medication refills. But every once in a while we capture a moment, like the one in the photo below, that remind us what this journey is really about. It is moments like these when your child does something so unexpected and amazing that keeps us all going. Our family is so fortunate to have a school district that is committed to individualizing and accommodating our son’s needs. Because of this, despite having mostly virtual school this year…
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6 GIFT IDEAS FOR CHILDREN WITH SPECIAL NEEDS for EVERY BUDGET
I am not affiliated with any companies related to these products or receiving any financial gains from purchases of these products. Click below to see some of my other favorite products. Perhaps those could be gift ideas as well. Adaptive Equipment Archives – special needs gps
