Thursday, July 13, 2017

CBD Oil Update

CBD Update: As many of you know, we started Eliah, my 10 year old son with severe cerebral palsy, on CBD oil in mid-December. It's been six months, and I can't believe the difference.
First, as far as seizures, it's been a HUGE improvement. Eliah used to have one or two strong seizures a week. Now, he has a tiny seizure every two weeks or so (less than 15 seconds long). It's usually a trigger like teething or a growth spurt. Nothing like they used to be.
Second, he seems to be so much more "there". He tries so hard to express himself, like responding to questions by doing what I ask. For example, I can say, "If you want to eat a sandwich, roll on your back", or "If you want to go to bed, put your hand on my face", and he'll do each thing IF he wants what I'm offering. We've been trying this for a long time, but he's really getting the hang of it. He understands me, and it's such a relief to have some sort of communication with him.
Third, this is NEW and the biggest, proudest mom moment.
Eliah used to army crawl around when he was younger, but he's gotten so heavy (75lbs) that he can't move around. He either sits in his wheelchair or he lays on the floor. He doesn't get exercise other than OT and PT every week. There's not really much he can do, and it's so frustrating for him. His world revolves around a 5 ft radius in the living room floor, or only where he gets pushed in the wheelchair. Physically, he just doesn't get to move around....and that leads to constipation from inactivity.
But, I got talked into buying one of those cheap Walmart pools a couple weeks ago, and it was the greatest thing for Eliah I could have done. He's been able to do Therapy in there this week, and he's opening up by leaps and bounds! To take this boy, who's practically motionless on a regular basis, and put him in a position where he is free of all restraints, it's unbelievable what he can do in just three days of being in the water. It overwhelms me.
It takes every bit of concentration for him to move his body the way he wants. And it requires the strength equivalent to us running a marathon. But he works, and he tries over and over again. And after and hour and a half, is utterly exhausted. The good kind of exhausted.
He amazes me in every single way. I. AM. PROUD.

Tuesday, January 24, 2017

Special Needs DIY

With my son Eliah growing, and recent discussions of how to affordably bathe a special needs child, I decided to take matters into my own hands and build a bath. You know my motto, "If someone else can do it, so can I".   I mainly did it for two reasons.... One, to make it easier to bathe Eliah.  And two, I wanted to prove it doesn't take a fortune to make this possible.

So I looked online and found this bath.... for $1700.... (holy moly that's a lot)

But when you look at it, it's PVC.  And if you know me, you know I love to work with PVC to make projects for Eliah. It seemed doable.  Besides, there's no way I could or would pay $1700 for one.

The main thing I needed to remember was, I don't have an 8ft long shower to roll this in, so I needed to make it a manageable size.   Eliah is tall, but there are ways to make it workable for him.  Eventually, when his is an adult size, I will probably make something that he sits more upright.  There's really no need for him to lay completely flat. There's never going to be room for a full-sized gurney in my house.

Anyway, I started with 1 1/2" PVC and made a frame.... And remember, I've never done this before, so don't be too judgmental.  I gave up on making an exact replica of the above bath, and I just made it up as I went along.  It's very sturdy, and it's held together with PVC Cement and screws.

Then I added two layers of foam rubber flooring, so that it will be padded for Eliah.

Then I added flexible plastic around the edge of the tub area, so that the sides will be firm for the liner and hold in water.  Even Natalie got in on the build!

Next, I added locking casters to the legs.

Then, I debated on how to make a water liner.  I originally bought a pond liner for $49, but then after thinking outside the box, I decided to use a commercial grade shower curtain.  It's thick, easy to clean, and easily replaceable if it gets dirty or worn out.  It also has grommets on one end, so I used those to keep the liner in place.  I just used screws on the pvc to act as hooks for the grommets.  When done with the bath, I unhook the grommets, drop the shower curtain down, and drain the tub.

I considered adding a real drain, but makes it much more difficult to replace the curtain.  It's a possibility for the future, but I really like to make things easy and changeable.

That was it!  The bath was done.   In total, it was $265.  And if had known what I was doing to start with, I could have done it for less because I wasted some PVC with mistakes.  Total time to build was about 6-8 hours.  Not bad for saving so much money.

I appreciate that I chose to buy an accessible house with roll in shower.  And the bath fit right into the 5ft shower.  But, in saying that, if I only had a bathtub, I would have designed and built something to work with that as well.  Anyway, the bath measures 54", so I lucked out.

Next step was trying Eliah in the bath....

The lift rolled right up to the bath, and I was able to drop him right in place

I added a pad in the tub so he wouldn't be directly on the cold plastic

I'm pretty sure Eliah loved it...

It was the perfect height to bathe him, no bending over.  And my clothes didn't get soaked.

I made it so water level didn't go above about 2 inches. It's adjustable though.
(Natalie is doing Sudoku on the toilet while Eliah relaxes)

After he was done with his bath, I let the water out.  I kind of forget that the shower is only slightly sloped, so it did go all over the bathroom.  But in the future, I will remember to let it out slowly.

It didn't take long to get the water out, and then I buried him in towels.

I was able to dress him in the now dry bath, and then back in the lift to head to the living room.  It was great for all of us!

Overall, I'm really happy with the result and proud that I wasn't intimidated with this project.