Sadie's first stander

Sadie's standing frame came Monday afternoon.  It's a pretty hurking big piece of equipment.  And I needed a therapist to help fit Sadie and show me how it worked... luckily she came Tuesday morning and we were able to get Sadie in it and upright!  She didn't complain, but I'm not sure she loved it either.

This is the Easy Stand Bantam and it's the coolest stander I've seen!  It's easy to get Sadie in it, and when she's tired, we can just sit her down, but continue with whatever activity we were doing.  The goal is to do as much therapy in this as we can throughout the week.


I think she DID like being upright.  She felt like a big girl.  And it was so fun to interact with her standing up (because as you can see, this lifts her about 18 inches off the ground).  Plus it was easier to do her hair without her head up against something, so having to hold her body at the same time.

The goal, to start out with, is 20 minutes a day of standing.  Then we'll work up to 30, and then 45.  We need to be checking for pressure sores, the PT told us, to make sure everything is positioned correctly for her and not rubbing or pushing on her in a way that is going to cause pain.  Hopefully in about 7-10 days she can tolerate 60 minutes a day of standing.  And about a week after that, we'll go for 45 minutes twice a day, so that's she's in it for an hour and a half each day.

This will help those hips by putting weight through her legs.  It will help her to strengthen muscles in her legs that she isn't used to using.  And hopefully it'll help her be more stable through her core, and she'll get better at standing completely upright (not leaning over like she is in this picture).  Right now, because she doesn't have the core strength, she is supporting her upper body on her elbows, which also helps put weight through her arms, which helps develop her shoulders and maintain mobility through her arms.

we start out in sitting position

Then move to standing

This is what her little legs look like all strapped in.

Who knows, maybe in a year, we'll be showing you video of Sadie using a gait trainer (which is like a walker, but more supportive)!!

Here's a little video of how easy this stander is to use!

The Giant Bumbo

Every parent these days knows about the Bumbo...that foam seat that supports your tiny kiddo when they're learning to sit?  Yeah, it's genius.  It's waterproof, wipeable, portable, and only $30.  (Unless you find one on Craigslist for $10 like I did!)  And most parents don't use it for long before their kid can sit independently or grows out of it...but not us.

I like the Bumbo because it holds Sadie's butt and doesn't allow her to arch.  It is also sort of deep, so she is forced to sit on her "sit bones" and not on her sacrum.  But the problem is that it's made for babies, and Sadie's 2, so the back isn't high enough to support her.  This causes her to either be in taco mood (kissing her knees) or be in back bend mode (staring at the ceiling).  She isn't strong enough to hold that much of her body up straight like she needs to to sit well.

So, you might argue that that's why we got the Happy Chair.  And you're right...but the Happy Chair isn't waterproof so I can't take it in the shower with me.  And she can't sit out in the yard with the sprinklers in the Happy Chair.  This is the Happy Chair's ONE FLAW.

The other night I went on a hunt for a "giant bumbo."  I figured there had to be some special needs product out there that was just like the Bumbo, but more supportive for kiddos like mine who still benefit from the Bumbo, but need a little more support because their body is bigger.

I found what I was looking for.

And it's $200!!!!!!!

This is what gets me.  It can't be much bigger than a Bumbo, right?  It can't be much more expensive to make than a Bumbo.  So, why is it 6 and a half times more expensive?!!  I'm thinking about writing the company a little email...

Dear Childrite Seat Company,

My daughter, Sadie, is 2 years old and has Cerebral Palsy.  She doesn't talk, she doesn't eat or drink well, and she doesn't sit independently.  She still fits in her Bumbo Seat, but it doesn't offer her the kind of support she needs.  Just tonight I was telling my husband, "we need a Bumbo Seat with a high back" and then I found your product.  I was so excited to see that it's exactly what we need, exactly what I was imagining.  I was ready to order one right then and there...then I saw the price.

I am appalled and disgusted at how much you are charging for this "Giant Bumbo Seat."  That's what it is, right?  I can buy a Bumbo Seat at Target for $30, why is your chair more than 6 times that price?

I imagine it's because most go through insurance to purchase your "therapy product."  And while we have great insurance, they have recently paid for Sadie to have a wheelchair, a Chillout Chair, and in the recent past have also provided her with a Tumbleform Chair.  We've been denied a swing, so I doubt they'd approve your product.  Not to mention that sometimes I don't want to wait 6-12 weeks to go through the process of using insurance.

I want to buy your product with my own money.  But it's too darn expensive.

You must make a killing in the profits from these.  And I'd be willing to buy one for $50, even $75...but $200 is ridiculous.  It's insulting.  Just because my daughter cannot sit independently and is too big for most supportive sitters, shouldn't mean that I deserve to look harder, wait longer, and pay more for something she needs.  We are already disadvantaged enough in this family, it's hard to believe you would want to make our lives more difficult.  But that's how it is when buying special needs equipment.  Everything is more expensive, more difficult to obtain, and there's always a wait of at least 4-6 weeks...minimum.

Please consider a "non insurance price."  I mean, the doctor's office does it, right?  Why shouldn't you? I would still like to purchase your product at a reasonable price if you'll let me.

I look forward to hearing back from you at your earliest convenience.

Sincerely,
Christie Beck

What do you think?  Should I send it?

Update:  I posted on my special needs Mommy forum about this.  Turns out there is a mom in our group who has one her daughter doesn't use.  She is willing to sell it to me.  And she is willing to let me borrow and try it out to make sure it's what we want first.  I will definitely let you know how it goes.  But it doesn't change the fact that I am still disgusted by the prices offered for special needs equipment.