Shoppin' Day - Sophie Style

Sophie and I had an appointment at a company that sells special needs adaptive equipment.  Today we tried out a few items and we were pretty successful.

Sophie is getting big.  She is long and she now weighs over 40lbs.  We have tried many, many car seats at regular retail stores but all the boosters that are out there are not supportive enough for my floppy girl.  Sophie has very little trunk and neck control when in the upright position so she needs alot of support.  I would love to get her one of the trendy pink car seat boosters but they just don't work for her, even with the five point harness.  She falls to one side because there is not enough head support.  She gets her legs and arms caught on the arm rests, not to mention her feeding tube getting all tangled in them as she moves around.  The seat depth isn't enough for her long legs, most kids just dangle or put their feet up on the cars' seat, but when Sophie dangles she arches or she rolls her pelvis forward.  Not comfy.

 

So we went and trialled a Britax Snugseat Traveller Plus.  Sophie won't need the pummel because she doesn't scissor her legs, and this one is totally not adjusted for her, but you get the idea lol.  It has two tilt positions which is excellent.  She can be in this 5 point harness until she is 105lbs!  I would like to see me getting her in the carseat when she is 105lbs lol!

This is one of the very few special needs car seats in Canada (we have found one other).  Of course, as soon as you call something "special needs" the price multiplies by 10.  This car seat is $1000.  There isn't that much more to it than any other booster, a bit more fabric and a bit more plastic.  Certainly not $700-800 more.  It is a rip-off and it is so infuriating.  But she needs to be safe and nothing else will work until she is in a wheelchair in the car.

Then we had a look at some bath chairs and shower chairs.  A little more fun to look at and I could think of a whole bunch of ways we could use these.  Like taking them to the beach for example.  We are going to order a regular bath chair with a shower base that is on wheels.  We will revisit the shower chairs when she is older, they are a hard plastic with foam and a commode and they just don't seem all that comfy, or necessary yet.

Sophie definitely had a preference for this Manatee bath chair so that is the one that we are going to apply for.  She will get one that is a size smaller.  The chair and shower base with wheels is $1500 - yep, another big pricetag, but not quite as outrageous for what you are getting. 

Insurance and ADP (Assistive Devices Program) both don't feel that car seats (for children that are required to have one by law) or bathing are actually necessary for children with severe disabilities.  Just like ADP doesn't feel that hospital beds are ever warranted for any person in Ontario.  Don't get me started. 
But this is where awesome charities like Easter Seals and The Ontario Federation for Cerebral Palsy jump into action and let families spend their money on enjoyable, typical things for their children instead of medical equipment.  These are a couple wonderful charities that help alot of severely disabled children and their families.

My mom and sister just recently went on a trip to Ikea and they brought back a sheepskin for Sophie.  Sophie is having issues on the back of her head because she is always resting it on either the bed or her wheelchair headrest.  So one of her Dr's suggested a sheepskin to help prevent any sores or hair loss.  She already has a small bald spot from when she was a newborn and in the incubator for so long and developed a sore.

I think it will be a definite improvement.  Doesn't it look comfy?!

She was pretty worn out after our two hour shopping spree and she slept for 2 1/2 hours when we got home.  We'll see when she falls asleep tonight.  Could be an all night dance party at our house lol.