During 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!
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.
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:
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!
Before I had Solly in my life, social media was a place to simply share photos, articles, humblebrag, and occasionally whine. Back then, even though I was working in digital marketing, I felt myself growing increasingly annoyed with all the oversharing on all platforms and was particularly ready to pull the plug on Facebook (hello, addiction!).
Then, I had a special needs child. Because of HIPPA, our doctors and therapists couldn’t connect me with other parents going through a similar journey. I connected with a few parents while in waiting rooms, but their child’s diagnosis wasn’t always the same, so I still had questions and craved advice from parents who had been there, done that. So, I started googling and realized how many special needs parents were making those kinds of connections on social media – mostly, Facebook, but also Instagram and Twitter. Over the past three years, I’ve started one support group and have followed and participated in several others. These groups not only help me discover new therapies, new medical treatments, and doctors that can help Solly, but they also give me a place to vent and share wins with people who go through similar ups and downs every day. Plus, I’ve even gotten to meet several local parents who I’ve since met up with in person! (These meet ups are refreshing – it’s always like reconnecting with a long-lost friend.)
A daily walk in the shoes of a special needs parent is certainly not an easy one. But I’ve found that with the right support group, life has gotten a little less scary and, in most cases, I’ve even felt empowered when making decisions for Solly.
If you’re new to a cerebral palsy or stroke diagnosis, or you’re simply looking for help with some of the alternative therapies, here’s a list of my go-to support groups on Facebook:
KISS Pediatric Stroke Support (I started this support group with two other stroke Mamas so we could not only connect parents with one another and share experiences, but so we could also follow what non-profits were doing to advance pediatric stroke awareness. We’ve grown to over 1,000 members and have parents from all over the world.)
Mom’s of Pediatric Stroke Survivors (If you’re local to the middle Tennessee area, be sure to join this one. It’s based in Nashville and gives lots of good resources on local therapies and doctors, plus the Mama who started it puts together a meet up every few months.)
CP Warriors, Mommies, Daddies, Grandparents, and Caregivers
2014 Cerebral Palsy Babies Support
Medical & Alternative Procedures
SPML – Selective Percutaneous Myofascial Lengthening
HBOT for Pediatric Neurological Conditions
Parents for HBOT
Stem Cell Therapy for Cerebral Palsy and Brain Injury (Parents Information)
Pediatric Cannabis for CP & Other NeuroMuscular Disorders
Pediatric Cannabis Therapy
Anat Baniel Method Parents/Caregivers
Know of any others I should add to the list? Feel free to send them my way!
As I mentioned above, I’ve also met some parents and gotten great info on other social media platforms. I’ll do my best to put together a post with my favorites, so if Facebook isn’t your thing, stay tuned!