The cost of living...

Today we got Max's new wheelchair. I will get some pictures soon, he really seems to like it. And I like how he's positioned! He can't kick me when he's sitting right! I think he feels like he's got more control.

When we signed the papers for the chair that took 5 months to get, the price jumped out at us most of all. $9,177.00...for a wheelchair. A pediatric wheelchair. We shook our heads in disgust and disbelief. Of course, we didn't pay a dime of that. Insurance or Medicaid will pick it up for us...but what about families without insurance. Or like our insurance, which only allows for $5,000 a year for all equipment.

The vendor says, "well you have to think of it...what's the cost of legs for your child...now he can get around." And I think...really...what's the cost of legs for your child? Oh nothing? He can walk. But because mine can't we have to get equipment that takes nearly half a year of constant checking and bugging so he can get around...by way of my constant lifting both him and his 60 pound chair in and out of the car so he can "get around". Of course I didn't say that...just smiled and thanked him for coming out and getting the chair to us.

This system of medical equipment is so broken. It's so wrong that we have to weigh out which is more important right now...a wheelchair (his legs)...or a talker(his voice)...a floor sitter(a way for him to be a part of the while family in the house)...or a car seat(so we can get him from point A to point B.) A feeding pump(so he can eat)...or therapy equipment(so he can do his therapy at home).

While a lot of these things will be covered by insurance, or medicaid, they will take multiple months to first get ordered, then sent to the insurance to get denied, then on to Medicaid to either get approved or denied.

I thought I would make a list up of all the things we would like to have for Max right now...and show you just how ridiculous the cost for these all are. And this isn't some far off, pie in the sky wish-list...these are things we need to have a comfortable existence for him.

We got the new wheelchair today, $9,177.00

We need a pushchair wheelchair, more like an umbrella stroller for the days I just can't or don't want to lift the wheelchair in the car$2,722.00

Blink Tango Talker: This is the newest talker we are trying to get through insurance medicaid right now...it's unlikely we will get it because we got the other one just a little over a year ago, which he's outgrown $6,899(several hundred more for the switches to operate it.)

Special Needs Carseat $700. He's getting so big, he's nearly outgrown the one he's in. This is something medicaid won't pay for, so we would have to hope for insurance to.

Chill-Out Chair $1830 right now he's either in a wheelchair, or on the couch laying down. We don't have anything in between for him to just chill out. We're hoping to get this covered by a local organization with funds for special needs kids for equipment that neither insurance or medicaid won't cover. We may get it, but they told us they've not ever seen someone with our income ask for their assistance.

Therapy Equipment (mats $500, balls$90, swings$1500, bolsters$250, gait trainer $3,000, stander$2,000, )

Floor sitter$500-$3,000-depending on style- for doing Occupational therapy, and playing on a peer level (aka with Adeline).

Bath chair and lift $3,000(so I don't drop him or break my back getting him out of the bath)

Stair lift $2,000 (as he gets bigger and if we stay in a house with stairs) not covered by insurance or medicaid usually.

Specialty Equipped vehicle...there's a range here. A fully equipped van runs around $60,000 for a used...brand new are around $150,000. We can get a used London Black taxi for about $30,000 used or a new one for $60,000, or try to modify our car for around $20,000(in addition to the car payment), or get a ramp and clamps for around $3,000- but this option will only work for a while as it will make him sit too tall to the roof.

If we were going for it, we would try to get a bike for him, or a trailer that I could pull him on. $3,000

A CNA/Respite monthly will make roughly $1745- or $20,940 yearly (I am hopefully going to get training to make some of this money, but will still need to hire some for help.)

Diapers $3000/yr(paid for by medicaid), formula $2880/yr(paid for by medicaid), feeding bags-feeding tube supplies $2400/yr for the tube, $2880/yr for the bags, $120/yr for the gauze and $280/yr for the wound dressing(all paid for by medicaid). Feeding pump$1500(rented by insurance/medicaid)

Medicine, we currently spend out of pocket $300 per month $3600/yr. I don't know what they would cost if we had to pay for them. Needles are $360/yr.

Let's stop there...and add it up. For the year 2009, Max will need $125,171.00 to have the same kinds of experiences a typical 5 year old would...we just have to adapt everything for him to get there.

That's not including the doctors visits and tests ran on him every three months. Those run anywhere from $300(dr visits) $200 each for OT, PT, Speech weekly, to thousands of dollars for tests and hospitalizations.

It boggles the mind how it is expected people can pay this. We are very fortunate to have good insurance and medicaid that helps us with most of this. But it will take months...some of it we won't get...so we will either pay out of pocket, or sell old equipment to come up with the cash to pay for it. I'm sure I've forgotten other things we will need, or use on a daily basis.

We love our son and we want him to have the best life he can hace...so we work the system and we make it happen. But it is such an incredible pain to get the basic things we need for him. We're not extravagant in the things we ask for. We don't expect or demand from the government. We work hard so we can keep the insurance, we pay taxes, we have daily trials that many couldn't fathom. And we make our lists at the start of the year, and hit the ground running putting in requests, hoping to get approvals, to get him what he needs...to get his legs...his feet...his voice...his nutrition...his medicine to keep him alive.

I am thankful and feel blessed to have most of our needs provided for us.

Monday I get started on my list...I want Max to have an exceptional year. I want this to be the year he exceeds expectations set by doctors and therapists. So Monday I'll hit the road running to do my part, and hope the rest falls into place and happens quickly and smoothly!