Noah's Miracle : Planning to Potty

Monday, February 3, 2014

Planning to Potty

Noah has had a flamingo toilet seat for sometime. Likely over a year in fact, gaining dust in the basement and unable to be used. I feel there is a large gap for equipment that truly works and that we need for our children in the US. I see so many amazing products that exist elsewhere and I scratch my head each and everyday wondering why don't we have that here? There seems to be only a handful of products to chose from and unfortunately you're often forced to pick the lesser of evils when you know your child needs something but it likely isn't going to be the right fit.

The smallest flamingo didn't fit Noah. He has a very tiny bum. And he'd just fall through the center, causing him not only pain but marks on his inner thighs. We, spent countless hours trying to add foam to it and buying typical toddler potty inserts - but to no avail. Nothing worked and nothing fixed the problem. When we explored a custom molded seat for Noah's wheelchair late last year, we were told about the option of making a custom insert that would sit inside the flamingo potty seat. We thought it was worth a try. Many hours and several appointments later, Noah's custom potty seat was completed. Medicaid will only provide a 12 month limit on it - which means if Noah outgrows the mold in 13 months we'll have ask Medicaid to fund another mold. With his custom wheelchair seat we only have to ask Medicaid for permission to fund and replace it every three years, regardless of growth or how many molds he'll need during those three years.

You might be wondering how exactly do you go about potty training a child that cannot sit, walk, talk, crawl or self feed. It's going to be tricky but not impossible. Like with any child you give them lots of opportunities to sit on the potty and with time we're hopeful Noah will be able to give us a signal, whether that be tugging on a bracelet that he'll wear or looking at something that will tell us he needs to go. I'm not going to sugar coat it - it could take me a while. Maybe a year, maybe more. But we know Noah is capable we just have to figure out his terms. I must say that Noah is rather proud to be sporting big boy britches over his diaper. He's really proud of himself.

I am glad that Noah had the basic foundation frame of the Flamingo sitting in the basement, since learning that many Snugseat products, including the Flamingo have been blocked by the FDA from entering the US. And it's not what you'd think - it has nothing to do with safety concerns. It is discouraging as this seems to be happening more frequently, causing children with special needs to be forced to wait months or even up to a year to receive equipment they need for daily living and their quality of life. Does the FDA care? Nope not one bit. It is reported that they hope to lift the block by July, which mind you is still almost 6 months away. Many families have already sought and obtained insurance coverage for these Snugseat products - but now they have to patiently wait.