Living Life in Limbo: How We’re Doing in the Time of COVID-19

One of the biggest lessons Solly has taught me is that you can’t control everything. Keeping that in mind, it’s pretty ironic that he was born to a type-A, control freak – a.k.a. me.  It took me some time to learn how to go with the flow, but five years into our parenting journey, there’s not a whole lot that ruffles my feathers anymore. That being said, when the future is in limbo, I sometimes still struggle to remain calm and unworried.

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Snuggles at home

After we moved to California, everything was very much uncertain. Other than immediately getting Solly on the waitlist for weekly therapies, I didn’t worry about anything else: I figured things would eventually fall into place. And they did – we got a coveted weekly spot at NAPA Center for Physical, Occupational, and Speech therapies, I found a very sweet and super responsive pediatrician who Solly and I love, and we were able to make a dent in setting up our medical team, having one appointment with a neurodevelopmental optometrist and scheduled appointments with a well-respected pediatric neurologist and orthopedic surgeon. We even made contact with the school district to kick-start the IEP (Individualized Educational Plan) assessment process so Solly would be set up to start kindergarten in the Fall with all appropriate supports in place.

Then the COVID-19 pandemic hit. And, while we are all healthy and safe at home, a life in limbo became our unforeseeable future.

Here’s how we’re doing in all aspects of Solly’s life: Continue reading

We Joined The Trexo Walking Club

img_1563I once read that in order to create new neural pathways, a movement pattern must be repeated hundreds, if not thousands, of times. In practice, this proves to be true: we spent months and months helping Solly roll over and army crawl before he was able to do it on his own and we find that as we work towards more complex milestones, more and more work is needed. Putting in this amount of effort for every single inch- and milestone sounds nice and do-able in theory, but in reality, there is not enough time in the day for this much therapy.

I often find myself up in the middle of the night, researching techniques, procedures, medications, and more to help Solly recover to his full potential, which is how I found out about stem cells, SPML, hyperbaric oxygen therapy, and all the alternative therapies we’ve tried. It was during one such research session in the wee hours of the morning in the Fall of 2018 that I came across Trexo Robotics on Instagram.

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Making Teletherapy a Success

Originally posted on NAPA Center’s Blog

With the ever-growing stay-at-home orders and quarantines related to COVID-19, life is weird right now. Our schedules are in limbo, our children’s lives have moved online, and as parents of special needs kiddos who already take on so much in a typical day, we’re now acting as our child’s teacher, nurse, therapist, and more, all on top of being Mom or Dad and everything else we usually do on a daily basis. We already had too much on our plates without a global pandemic: to say we’re stressed out doesn’t even begin to describe how chaotic our lives feel now.   img_2717

Fortunately, therapy help is available by way of teletherapy or telecoaching. I know what you’re going to say, “But I still have to do the hands-on work during these sessions. I’m still acting as my child’s therapist.”

Yes, that’s true. With teletherapy, you will be an active participant in your child’s session. But, that’s just one part of it. There’s so much you can gain from teletherapy that you may not have considered. Simply stated, teletherapy can make life a little bit easier when everything else seems really difficult.  Continue reading

Always Celebrate the Inchstones

img_1608I’ve been working on a few new posts about our life in Los Angeles, but Solly just hit a new inchstone and progress is always a good reason for a quick update.

Last night, Solly started holding and drinking from a handle-free cup completely independently! It’s not perfect: he’s still making a mess with it, spilling water from the cup about 80% of the time and sometimes forgetting to bring the cup upright after taking a drink, but we can now proudly say that Solly can pick up a cup off of the table, bring it to his mouth, take a drink, and place it back on the table.

This is a huge accomplishment, especially for a kiddo who the NICU doctors once said would never eat or drink by mouth. We’ll continue chipping away towards all of Solly’s milestones, but today, we’re celebrating this inchstone and Solly’s progress.

Setting Goals for Intensive Therapy

img_0597We’re in the final week of our fourth three-week intensive at NAPA Center. Once we wrap up on Friday, we’ll have completed a total of six intensive therapies with NAPA and several at other clinics, and while I’m far from being an expert in navigating the world of intensive therapies, I now feel confident in what to expect when we walk through the doors on Day 1 of an intensive.

While there is a lot of planning and paperwork that goes into an intensive, without a doubt, one of the hardest parts of intensive therapy – aside from managing Solly’s fatigue and constant need for motivation – is setting goals at the onset of treatment. Goals are vital to the success of intensive therapy. They help the therapy team understand what I envision for Solly; they guide the therapy team in developing a plan for the duration of the intensive; and they can also dictate Solly’s confidence throughout the intensive therapy. Too easy and he quickly becomes board. Too hard and he doesn’t want to participate. For these reasons, there is quite a bit of pressure for me to fine tune our list of goals before starting an intensive.

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