Moving By Jen Reese

We recently moved to a new house and boy was that a huge task. Everything for families with a member who has a significant medical diagnosis or disability is usually a huge undertaking. From house hunting and finding a house that is accessible for her needs with good school support, to coordinating a move when we’re still in a pandemic. It’s super stressful.

Not only were we in our old house for 17 years, in that time we added two children and two home offices for teleworkers into a 1600 square foot house. Add on to that lots of medical equipment and supplies my 14-year-old needs on a daily basis. A good percentage of our boxes were medical supplies of one sort or another.

Not to brag but I’m a master of logistics. I’ve had to be with my daughter’s medical diagnosis – all her doctors and therapy appointments, making sure we always have supplies and prescriptions are refilled on a regular basis. 

This has caused me and many mommas like me to become hoarders of all things medical, all things our kids need that are not always easily accessible. I have multiple sizes and styles of diapers, foot braces my daughter has outgrown, oral syringes for medications, bandages for bedsores, various medications and machines to support my daughter if she’s in respiratory crisis and the list goes on and on. We keep items well after their expiration date because a drug that may have less efficacy is better than no dose at all.

This need to cling to anything with a medical usage was only heightened with COVID. I immediately sprung into action when the world was shutting down. 

What the heck did having a kid with high medical needs during a pandemic even look like? 

Where the heck do you get diapers for a 14-year-old? 

Would supplies for feeding tubes and prescriptions be in short supply? 

Would stores even be open? 

UPS and FedEx delivering? 

The toilet paper shortage during COVID quarantine was the first real shocker for the “regular” people in the world, those without a family member with a significant disability and medical diagnosis, those who don’t have to consider where and when things are coming from and how they’ll restock. My daughter’s medication is not optional. If a dose is skipped she could and most likely would have many, many seizures and need hospitalization – possibly resulting in more brain damage or worse.

One thing that is established, although not formally titled, is what I call the Super Secret Special Needs Mommas Underground Black Market. When we have an excess of supplies, or supplies our child can no longer use, and someone is in need, we share willingly and without charge. We pay it forward and have all benefited from the charity of others. 

This has been especially important recently when the elemental formula Elecare was recalled over possible salmonella contamination. This is a special formula people with varied diagnoses, food allergies and other digestive issues rely on as their ONLY form of nourishment. Families have been devastated. They have been told to throw out thousands of dollars of food, the ONLY food that keeps their kid alive. My heart has broken for these families because I get it. This formula is not accessible in a regular store, is ridiculously expensive and must be ordered from medical supply companies. 

The call went out immediately over social media and in support groups nationwide. The Super Secret Special Needs Mommas Underground Black Market was definitely activated at high alert. People were scrambling, checking their stashes to see if they had any Elecare that was not expired. Unfortunately the formula included in the recall was a year old in some instances so those hoarding mommas had to trash their treasures.

There are similar formulas available and many of these families were scrambling and working with doctors and supply companies to sample other options. One that is very similar is Neocate, which my daughter has used in the past. She no longer relies on this formula as she has been able to tolerate other foods and formulas so we had an excess that was just sitting around and some nearing expiration dates. In the past few weeks I have given away to friends and families in need probably a thousand dollars worth of formula. 

Some of these kids are still unable to tolerate a change in their diets as their GI systems are so fragile and as of yet there is no end in sight, no all clear date from the company that makes Elecare on when they’ll be able to provide a safe product again. This has also caused supply issues for some of the other formula options and Neocate in particular is now on backorder. 

I have a few friends who have approached this scary situation in different ways. One friend is still using the recalled formula because her son’s whole digestive and GI system is so fragile that she’s afraid of any change. Another friend has been buying as much non recalled formula on eBay as possible but that supply is running low. A third friend, whose son has the same diagnosis as my daughter, has been in the hospital for a week with her son testing other formulas. He’s failed a few and may need to receive nutrients intravenously. The recall is affecting the full formula market now too, including non-medically necessary formula and causing supply issues and rationing by stores.

Think “COVID toilet paper shortage” with no end in sight and now another fear in the back of your mind of how you are going to keep your kid safe.

    Finding the right medical team can be tough when you have a disability. We talked to people with disabilities and their families about some of the little ways healthcare professionals have made a big differnce.
    Few things can shake you to your core as deeply as your child facing lifelong health challenges.  Whether it’s an obvious abnormality during a prenatal scan or seemingly minor developmental delays…

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