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.  

Tuesday, April 7, 2015

Absence Just Makes Things Difficult

I realize that I have not written on Eliah's blog in almost a year.  And the reasons for such are varied.  Part of my lack of writing is the fact that there is an ongoing custody battle, and anything I write about my children could be seen in a negative light.  I can't complain about the situation or say what's been happening, because that could be construed as libelous, no matter how true I know the facts to be.

The other big part of why I have not written is that it hurts to be away from my children.  It continues to hurt to think about them all the time and not have opportunity to be with them as much as I want.  I feel like I am missing their childhoods, and they are growing without me or my influence.  I am missing the "firsts" in their life,  their birthday parties, their field trips, their first time at Disney, and even the mundane things like homework.  Unfortunately, I don't even see those photos and it kills me.

My heart is torn that I only get a handful of hours a week with them.  It's NEVER enough.  I am constantly thinking about what I'm missing, and my heart aches.  I visit their schools to see them every week.  I email Natalie.  I beg for more time, because they need me as much as I need them.

For the past year and a half, I feel like I've been treated like a criminal for having cancer.  But even when I was close to death, I've never stopped loving or wanting to be with my children.  And I will never stop trying to get them home.  Some have even called me "relentless".  Damn straight I am.  Why wouldn't I be for my own children?

The good part is, I'm healthy, cancer is gone, and I know this storm will also pass.  One day, I will once again be reunited with Natalie and Eliah.  And that gives me great hope and meaning to continue.  But I will always mourn this time that I am missing.  I deserve to watch them grow and have an influence in the people they become.  And they deserve to have their mother's love and guidance every day.

So, although I have not written here in almost a year, it is not the end.  I believe, in time, good things will happen.

Wednesday, May 28, 2014

Happy 7th Birthday Eliah!

I'm so proud of you Eliah.  You are strong and resilient.  You've had a great school year, and you've done so well dealing with change.  I miss you all the time, and I can't wait to have you home with me.  I love you with all my heart!

Monday, February 24, 2014

Ode to Playskool's Busy Ball-tivity Center Toy

In that wheelchair, there sits a boy
So clever, so smart, so full of joy
Amazing strength, from deep inside
He lifts his head, to smile with pride

The little boy, who cannot walk
The super boy, trying hard to talk
His vision impaired, he can't see as before
He chooses instead, to believe there is more

To explore the world, with hands and sounds
And rolling himself, all over the ground
In the blink of an eye, he's across the floor
To get where he's going, just a little bit more

There awaits a toy, so loud and so bold
It's the last of it's kind, or so I've been told
Who knew when I got it, those many years past,
couldn't live without, it became such a blast

He makes it there, the button he hits
The toy comes to life, throwing him into fits
A smile, a squeal, and laughter it sparks
Wiggling and kicking, right from the start

The toy lasts a week, or two if he's gentle
Playing non-stop, makes everyone mental
It breaks each time, the same way as before
He's lost a best friend, as I search for more

Seven to date, all the purchased intent
To see that smile, so worth what I've spent
Another toy, it arrives in the mail
No more of it's kind, don't let it fail

If it breaks we'll survive, I'm sure he'll be fine
I love making him happy, one toy at a time
And when he grows up, I hope he recalls
The music and laughter, and three spinning balls

One last hurrah, with the favorite of all
The toy my boy loves, that taught him to crawl
One season of life, stored and collected
Made happy his heart, the parts now neglected

I bought this toy for Eliah seven times now. I have a stack of broken ones in his room. It's been two years since they discontinued it, but I occasionally find one on Ebay. And since we postponed Christmas until spring, I was able to find one last one to give as his Christmas present. He will be thrilled to see it again, as the last one broke a year ago.


Monday, November 11, 2013


Eliah has been having small jerks/startles for several months, but never realized they were seizures.  I thought maybe they were his hip joints rubbing together, biting his tongue, or something that I just didn't know.  When I took Eliah to the Neurologist in August, it was just for a check up.  While at the doctor's office, Eliah startled a couple times and the doctor took notice.  He immediately requested an EEG.  

We went back to do the EEG for about 45 minutes, and during that time, Eliah had the "jerks" about every three minutes.  The doctor came in to tell me that those were seizures, and that Eliah was having LOTS of them.  Based on the fact that he was having them every 3-4 minutes all day long, I calculated that he was having 50-200 a day on top of his bi-weekly large seizures.

Last night, Kelley called to tell me that Eliah had a major seizure in the car.  He stopped breathing, and it took 15 minutes before Versed (sedative) started to calm him down.  When they got to the emergency room, Eliah's temperature was 104 and chest x-ray showed that he has pneumonia.  Eliah also spent several hours on an EEG today.  

When I arrived at the hospital this afternoon, Eliah was still getting his EEG.  The Neurologist was called in to see that Eliah's seizures have gotten much worse since August.  He said that his brain is in almost a constant state of seizure while Eliah is sleeping, and there are many while he is awake.  The seizures are stemming from the Occipital lobe of the brain.  He wants to see if that is just because of whatever Eliah's illness is, or if it's all the time, so he wants to repeat the EEG in a few days. 

I personally believe that the increased seizure activity is due to stress of his new schedule with school and the fact that the children have not been able to see me on a regular basis.