If I tell you the story of how we got a stander for Andy I would have to start at the beginning. The very beginning.
Back at the beginning, both myself and my husband were unemployed. My husband was finding odd appearances he could make, sometimes he had one or two a month, some months he had none. We lived in a one bedroom apartment in NYC with my in-laws. It wasn't easy, it wasn't as hard as others had it. My husband looked for work for 18 months until he received the call from Oneida County. Our number was called. A call that so many college and law school graduates never receive.
We still struggled mightily. We were thankful for the food on our table, and Andy's medical bills made us become very far behind. Then a light came- help from charity for children, a local charity in Syracuse. They help us now with the medical bills.
In July of this year, Andy's physical therapist informed me he was getting to the age where a stander would be beneficial. I had never heard of this device before. She put in a request with TRADE for Andy to receive a stander when one became available. At last, in September, one was available.
A very nice man who worked at UCP drove it home for me in his pickup truck because it would never fit in my car. We placed Andy in it, and it was FAR too big. We returned it shortly after.
And we waited. And waited. I called my health insurance company at the time, and they only cover 50% of medical equipment after a pre-authorization process. We waited some more.
And opportunity for better employment came open to us, and my husband applied. He was offered the job, and with the job came a new type of health insurance.
I prayed. I don't talk about praying often, it's intimate for me, but here I am talking of it two blog posts in a row.
I took the leap of faith. I told Andy's PT that we could not wait any longer. It is November, it's been 5 months. Begin the process of getting the stander, we will go through the new health insurance and whatever they don't cover we will figure it out.
AKA we might eat ramen noodles for months. We will figure it out.
Let me explain what a stander does. It stands a child who may or may not have head control. By being in the standing position, bones and muscles continue to grow and develop properly. Unfortunately if a child with cerebral palsy does not have one, he or she will most likely need surgery to correct the damage caused by not having one. It increases the chances for a child to stand, and one day walk with or without assistance. It increases general health as well.
I received a call last night from the therapist. She told me the company she uses to obtain medical equipment informed her the stander would cost $2,000-$3,000 out of pocket. We would pay them directly, then if, and only if because a lot of insurance companies do not cover them, we could be reimbursed by our insurance for the amount they cover.
I cried for hours. The guilt was so overwhelming I couldn't eat. All I could think about was the physical possessions that I've so selfishly acquired during the last year. Especially the vehicle that I drive. Would I not take back that vehicle if I could so Andy could have a stander? What value did my personal belongings hold if I could sell them to give him what he desperately needs?
It was a rough night. And despite what everyone tells you, daylight brought no relief.
I finally called our new health insurance company, our coverage starts tomorrow.
If you provide them with medical information and a prescription and wait for approval, and go through an in network provider, they do 100% coverage with nothing out of pocket.
Now I've called and left voicemails for therapists and doctors. I'm ready to do this.
