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Life With TBI: Getting My Son the Therapy He Deserves
byEric WeingradOct 08, 2015
Last December, my 11-week-old son Holton suffered a traumatic brain injury, under the care of his nanny, after his skull was
cracked and he stopped breathing for an unknown amount of time.
After receiving the most terrifying call imaginable, we raced to the hospital. Once we arrived, my wife and I went from thinking
our son would only have to stay a few hours to wrapping our heads around the fact that he might not even live
through the night.
Thankfully, he did make it through that evening but the next six weeks felt like a nightmare as
we spent every waking (and sleeping) moment by our son's bedside. The situation
was everything you'd think it was: frightening, sad, confusing and beyond surreal.
However, as the weeks went on and we began to truly understand the
severity of Holton's injuries, we stopped questioning why and started to focus on
how. As in, how do we get our son back? The answer was — and still is — therapy.
Photograph by Eric Weingrad
Once Holt was discharged from the hospital, we immediately got to work on securing various
therapists and nurses for our son's recovery. It was no small feat as we were
met with roadblocks at every turn. There
were countless forms to fill out, endless automated numbers to call and less-than-helpful
insurance agents to convince. Due to our son's fragile condition, we were not able to physically
take him to any nearby therapy facilities so that narrowed down our choices by
about 95 percent. After all, therapy is a business
and doing house calls is a bit of a throwback to simpler times when health
professionals carried a black leather bag filled with tongue depressors,
thermometers and cheap lollipops.
At first, the only therapists that offered to work in-home
did not take insurance so we were forced to pay out-of-pocket. We were already
stretched thin from months of accumulating hospital bills so this was not
an ideal solution—albeit the only one we had for a moment. So we didn't delay any possible recovery progress, we hired a wonderful occupational therapist named Brianna, who began to work with our son twice a week with Holton's nurse.
Photograph by Eric Weingrad
Since this seemed like our only option, I asked our insurance company how we can get my son's
medically necessary in-home therapy covered. They told me I had to prove that no
one within their network of providers could help under our plan. They emailed over a list of
about 400 varying therapists from the Los Angeles area but forgot to attach a
note that said, "Good luck sifting through all these numbers, jackass!"
It had now been almost five months since my wife stopped working after Holton was born so she had to return to work full-time again. That just left me, a guy with as much patience as a swarm of angry hornets, with the honor of
navigating through the murky, unchartered and positively annoying waters of health care. Yippee.
For two weeks, I
spent hours every day calling all of these random companies. Some of these
places our insurance company sent over didn't even handle therapy. One place answered their phone with a "Pickup or delivery," option. I opted for delivery. A lot of the places sold medical supplies and one, in particular, told me they only dealt with recovering alcoholics. When all was said and done, I kept those wrong numbers because
at this rate, I was going to need a custom straightjacket to wear to an AA meeting. I couldn't find one single place able to help my son and it was driving me crazy.
Now, a lot of the places I called did offer pediatric
therapy but only in clinic, which wasn't an option. Some of the people I spoke with showed true compassion
but had their hands tied when it came to in-home therapy for our son. A
few caring individuals actually went the extra mile and did their own research for us. Amazingly, they all came back with the same news: To receive
in-home therapy in California, you need to go through the local state-run
regional center or find a figurative needle in a haystack of therapists covered
by insurance for home visits. Problem was, I had already been in touch with our
local regional center and they could only help my son if we exhausted our
We were in a pickle. Our insurance coverage through my
wife's work was so good that it technically never exhausted. Our coverage is
basically infinite. The way it works was after 24 therapy visits—as long as the
therapy was still deemed medically necessary—we'd receive another 24 visits.
So here we were with amazing coverage and no place to use it. It's like going
to Vegas with $100,000 in cash but for some unexplainable reason, the casinos only accept credit cards.
I kept at it and called every place they gave me. More than
three-quarters of the way through the list, I thought I was going to literally prove that
none of the providers they gave us could cover our son's needs. And just as
hope was truly fading, I spoke with a woman who owned a pediatric therapy
facility only a few miles from our home. Her staff, like the others, didn't do in-home visits. Regardless, I explained my family's situation and how my son was injured. All a sudden, we had hope.
Ironically, this company, Can Do Kids, Inc., not only
accepted insurance but was the only place in Los Angeles that also worked in
tandem with the local regional center. We struck oil.
Dr. Lori Annes, the owner of Can Do Kids, wanted to help my
son. She offered me a deal I couldn't refuse. She spoke with a couple of her
therapists and filled them in on Holt's story. They agreed to move their
schedule around so that they can come visit twice a week to start working with
Holton—once for physical therapy and once for occupational therapy. It wasn't enough but it was better than nothing. The deal was that they would do this with the
knowledge that once we all felt Holton could travel by car for his
appointments, we would figure out a way to bring him in. I can honestly say, I
had no idea if I was going to keep my end of the bargain, but I agreed emphatically.
Within a week from our first conversation, Holton had two
new therapists, Vince and Amanda. And after all was said and done, I also found
a wonderful occupational therapist, Roxy, who practiced aquatic therapy that was also covered by insurance.
Photograph by Eric Weingrad
Over the next six months, everyone worked hard on helping
out Holton. He's made small strides; he has a long way to go until he starts
hitting more meaningful milestones, but he's on the right path. Today, Holton
is strong enough to be taken to and from therapy so he now gets PT twice a week
and OT twice, as well. Once a week, Roxy works with him in our community's
pool. He also now receives visual therapy from the LAUSD because the damage to
his brain has caused him to also suffer from something called CVI, which stands for Cortical
Visual Impairment. Basically, his eyes are perfect, but the brain damage has
ruined his ability to process visual information properly. Since he's now only 12 months
old, we really don't know what he sees—or doesn't see for that matter.
At this point, Holton receives six different therapies a week.
And quite honestly, I'd love to get him more. The only proven method to
increase the likelihood of improving brain damage is stimulation. Therapy
provides that stimulation and hopefully everything he's doing is improving the way
his brain communicates with the rest of his body.
While we aren't willing to try anything someone puts in
front of us, we're open to anything that has positive, proven benefits.
Just recently, we found this wonderful pool toy called the Otteroo that is
designed to help children like my son. Holton, who
will cry if a ladybug farts 100 yards away from him, loves this device. When we place
him in this quasi-horrifying looking floatation ring, he just relaxes. I kinda wish they made one for adults, with a drink holder.
For now, Holton is getting a lot of therapy but he still needs more so we'll continue to advocate and fight for him. That's all we can do as parents so that's exactly what we'll do.