NAPA is Magical

On Day 1 of our 3 week intensive at the NAPA Center, which stands for Neurological and Physical Abilitation and is located in Los Angeles (and Sydney and soon-to-be Boston) and NOT Napa Valley, I proudly posted a photo on Instagram of Solly kicking butt and standing (with assistance) during the first hour of his intensive therapy. A Mama of another CP kiddo quickly posted: “NAPA is magical! I hope you have a great experience.”

I smiled as I read her comment, thinking to myself – yeah, yeah, I’m sure it’s great, but we’ve done intensive therapy before and I’m pretty sure I know how everything will go.

Nope. I was wrong. That Mama was right. NAPA is the most magical and amazing place on Earth. Solly made the most gains I’ve ever seen him make in a short time period.

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It’s a Wrap: Round Two of HBOT

img_0987During the first week of March, we had our 40th and final dive of our second round of hyperbaric oxygen therapy treatment. We were originally supposed to wrap up during the final week of February, however, due to a couple of snow days and a mid-treatment respiratory infection, we took a few days off during our treatment. While this would have been a big deal during our first round of treatment since we travelled to South Carolina for HBOT, this time around, it wasn’t a big deal – in fact, a day off was quite nice!

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Just Passin’ Time

Solly and the HBOT chamber

Solly in his submarine

This morning, Solly and I finished our 5th of 40 dives in our second round of hyperbaric oxygen therapy (HBOT).

As I’ve told folks about this therapy over the past few days, the biggest question I’ve gotten is: how the heck do you pass the time in that chamber? During our first round of treatment, the answer to this question was easy: we were in a sleek, all-glass chamber with a TV on the outside, so we’d watch an hour of Sesame Street or Fixer Upper and our time in the chamber would pass by rather quickly. However, the local facility where we’re doing our second round of HBOT has a very different chamber called the Fortius 420, which looks a bit like a submarine – it’s fairly dark, has three small windows, and no TV (eek!). This difference is, in part, what led to my anxiety before we began our second round of treatment. I kept worrying, “How was I going to entertain a 3-year-old in an enclosed space for over an hour every day….. and stay sane?”

In sum, we spend 75 minutes in the chamber. We “descend” to a pressure of 1.5 atmospheres for about 7 minutes, we are at that depth for 60 minutes, and then we “ascend” for about 7 minutes. We’re allowed to bring a bottle for Solly to drink, a few books, and some approved toys.

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HBOT FAQs

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Our first-ever HBOT dive

Every time before we start a new therapy or see a new doctor, I have trouble sleeping. I sit up, worrying about what could happen or what could go wrong. The fear of the unknown always comes out to play. This was very much the case last night. Today, we are starting our second round of hyperbaric oxygen therapy (HBOT). I know, we already did one round – 40 dives – of this treatment last Spring (see related posts here), I should be a pro at this, right? The answer should be yes, however this go around, we are trying a different chamber at a local family clinic. So, new procedures, new doctors, new place, new chamber…..it was nerve-wracking in the hours leading up to our appointment, but we’ve now gotten the first dive of our second round of 40 dives under our belt.

When parents learn about the potential healing benefits of hyperbaric oxygen therapy (HBOT), there are so many questions and uncertainties that arise before starting this treatment. Because it is an alternative treatment, there isn’t a ton of (U.S.-based) research to support it, and most doctors will try and dissuade patients from doing it.

Given this general lack of support and information for HBOT, I thought I’d post some of the questions I’m often asked most by other parents. It’s my hope that these will help provide answers for other parents researching HBOT as a possible therapy for their own child:

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So long, 2017!

Every once in a while, this roller coaster that we call life heads downwards. Nothing is wrong. It’s just that Solly, Bea and I have been sick with the ick for the better part of a month, which means I have less time to work on Solly’s stretches and exercises, and more time to focus on everything that we aren’t accomplishing.

When life gets like this, I feel a little down for a day or two, and then something as silly as a Facebook memory post knocks me out of my funk. Seeing a post from a year ago reminds me just how much he has grown up and come so far in such a short time. What a year 2017 has been!

We started out 2017 with the mindset that it was the year of change, a year to focus on alternative therapies and procedures as a means to propel Solomon’s progress.

Here’s what we did:

  • First, we added a little sister to the mix. Nope, that wasn’t solely for Solly’s benefit, but let me tell you, having a little sister around has been so good for Solomon. For the first several months of her life, Solly was just so curious about her. He learned how to be gentle around her and to simply observe. Now that she’s a very busy 11-month-old, we’re starting to see the beginnings of a very special sibling bond. Sure, they’re already bickering and picking on one another like siblings typically do, but we’ve also caught them in the act of loving on one another – hugging it out and giggling with each other – and it’s moments like this that make my heart soar. I can’t wait to watch them grow up together!
  • Shortly after Bea’s birth, we moved the family to Hilton Head Island for 2 months so we could start Hyperbaric Oxygen Therapy.
  • In early June, Solly had a procedure called Selective Percutaneous Myofascial Lenthening (SPML). In short, this helped loosen up his legs and give them more range of motion.
  • We followed up SPML by adding hippotherapy to our weekly therapy regimen and we also did two rounds of intensive therapy – one in Nashville and the other in Tampa.
  • And even though we had quite the crazy schedule in 2017, we even found time to cancel all appointments for 10 days and take a vacation.

The end result from our year of change? Progress. Lots and lots of progress. Solly went from having no words to making LOTS of noise (he has about 20 words right now) and from not being able to take any steps AT ALL to taking several assisted steps.

He’s sitting up straighter and by himself for longer periods of time, he’s eating so much better and he’s now insisting on holding his bottle and using his own spoon with assistance. He’s made gains in so many areas!

I’d love to say that 2018 will be a low key year compared to 2017, but that simply won’t be the case. Our year of change showed us many things, but most importantly, it showed us the value in alternative and intensive therapies and the fact that we shouldn’t settle when doctors don’t believe in Solly’s capabilities. This means that in 2018, we’ll be traveling for more intensive therapies and to consult with different doctors and specialists. We’ll also be doing another round of HBOT (in Nashville this time, starting next week!), trying stem cell therapy, and adding an additional weekly hippotherapy session.

I think it’ll be a busy/fun/productive/unexpected year and we’re up for whatever the year throws our way. Stay tuned for updates!