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!
Oh Mylanta!
I’m snagging one of our beloved Nanny Jen’s favorite sayings for the title of this post. Any time Solly is being just a little bit crazy, Nanny Jen will say, with much flair and exasperation, “Solly, oh Mylanta!”
To say that the past two weeks have been insanely busy would be an understatement. In the last 14 days, we’ve recovered from colds, done a 3 day Anat Baniel Method intensive, wrapped up our second 40 dive treatment of HBOT, had two hippotherapy, one aquatic therapy, one feeding and one speech therapy appointments, got a new gait trainer, packed up our lives and flew to Los Angeles, started a 3 week intensive at NAPA Center, and had a stem cell infusion.
Whew. We are running on fumes (and lots of coffee).
Living in the Past
I try not to be a dweller. I like to live life looking forward, basking in positivity and finding the good in any situation. Anything that has happened occurred simply to mold me into the person I am today, so there’s no reason to have regrets and worries about the past.
This tends to be my attitude towards any event, except for the day of Solly’s birth. Even three years later, thinking back on that day and the following month in the NICU puts a wrench in my stomach and tears at my heart. It’s hard to revisit that time. I can’t even look at the blog posts I wrote while we were in the NICU. I just can’t. Not yet.
However, when my sweet friend, Laura, asked me to share Solly’s story as an Inspirational Kid for her website Paisley’s Purpose, I knew I had to man up and revisit that time. Even if it could give solace to just one other Mama following a similar path, it would be worth it. So, in just over 1,000 words, I revisited those hard first days in our journey with Solly. The post goes into a little more depth than I’ve ever written about that day, so for those who are newer to our story, it might be worth a read. Read it here.
Lately: On Specialists and Therapies
The other day, a neuromotor researcher asked me to send her a list of all the therapies we are doing as well as the specialists we regularly see. With all the traveling we did and changes Solly went through in the last year, this seemingly simple request was not so simple! After our year of change, in my mind, we really pared down the number of therapies Solly did each week, but our schedule is still pretty full. The biggest difference is that we have more therapies that are fun for Sol and fewer that require him to sit still in a chair.
After racking my brain, here is the list that I sent her:
Another Walk in the Park
We struggle with motivation. I always get a little envious when I see other babies just sit and play with toys or get up and walk toward their favorite stuffed animal. Bea would do just about anything for an episode of Sesame Street or for her Elmo stuffed animals. Nothing like this ever works for Solly. He’d rather just sit and chew on whatever is in his path than press buttons on a toy or play with a toy car.
This has made therapies – both in a clinical setting and at home – rather difficult. It’s impossible to work on Solly’s strength or functional movement if all he wants to do is hunker down and chomp on a puzzle piece. If a 3 year old doesn’t want to do the work and isn’t interested in anything that will trick him into doing the work, how can we make any gains?
Sol the Man 