The Floopy Mystery and Occupational Therapy

“I want floopy.” Jax said with a smile.

I thought maybe he was talking about some kind of food. “What does floopy look like?” *blank stare*

“What color is floopy?” *blank stare*

“Do you like floopy?” I asked, running out of ideas. “YES!” Jax screamed.

OK – so floopy is something really cool. I’m unsure if floopy is a person, place, or a thing at this point so I just smiled and nodded. Hmmm…

Later on that afternoon as I was packing our picnic lunch, I said “Time to get your shoes on, Little Buck. It’s time to leave for therapy!” Jax ran from the other room jumping and laughing “YEAH! FLOOPY!”

Ah – I get it. Floopy = THERAPY!

Jax has started going to occupational therapy two times a week in addition to the four days of services he gets in special education preschool. It has been a pretty grueling schedule and we are still getting used to the change. Neither of us is used to having a place to be every day – we had gotten used to our leisurely walks to the park whenever we felt like it. 😉

In therapy, Jax is working on self-regulation, sensory processing, fine motor skills, and attention and focus. It’s basically a fun trip to a place with tons of toys and things to climb – so of course, Jax loves it. During the first two sessions, the therapist had us moving from room to room to do different activities. This might not seem like a big deal, but Jax has a hard time with transitions, so he had to check out every single thing in each new room before he was ready to work. We wasted a lot of time!

The therapist is discovering that Jax’s ability to process directions in a busy or new environment is almost zero (I already knew that.) This is because he struggles with processing visual and auditory stimulus. His brain can’t filter out sights and sounds in an organized way so he tries to avoid the input as best as he can. He does this by trying to take control of his environment and the sensory input by choosing a new location. In other words, he does not stay still. At all. Not one bit. We think this is his coping mechanism for avoiding too much sensory input.

So, the therapist moved all of his activities into one small room. Now, instead of wasting time transitioning from place to place, Jax can spend the time (eventually, hopefully) focusing on the task at hand. So far, we’ve been able to get him to sit and do a stationary activity (i.e. puzzle, book)  for 2 whole minutes. That’s progress. We had to bribe him with a “special treat” of fruit snacks, but I’m ok with whatever works.

We’re glad Jax is getting the help he needs. Now, I gotta go – we have floopy…

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Working on fine motor skills and drawing lines. Jax wanted to draw a “racetrack” instead.
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I love this pic – it’s a great example of Jax’s neverending activity! He’s a blur!

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Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

5 thoughts on “The Floopy Mystery and Occupational Therapy”

  1. Hello Ishmail – thank you for the update! That is how Jax’s tumor behaved. It lit up under contrast for the first few MRIs, then it did not. The next MRI after that, the tumor showed signs of shrinking! I really hope that is the case for you, too.

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  2. Hello there, I am really inspired by the story of your brave son, and the incredible support you are giving him, you are really strong.
    I am a 24 years old guy .. did not have any medical problems until about a month ago when I slipped and fell on my head, then I went to the hospital to check it up, the same thing happened to me, they told me they have found an incidental finding of a tumor in my right thalamus of 1 cm in size. Then I went to mdanderson in Houston, texas. They told me radiologically, it looks like a pilocytic astrocytoma which is WHO grade 1 lesion. But the only way to know the definitive diagnosis is with biopsy anyway. So it could be anything really, but the most likely diagnosis is a pilocytic astrocytoma based on the radiologist. So the neurosurgeon recommended that I repeat the MRI every 3 months to see if it is changing or not, and if it is growing then he will proceed with biopsy. I am really scared now but the story of your child gave me hope, really.
    Please keep me in your prayers, and wish me well.
    I pray for you and your son and wish you all the best.
    God bless you.

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    1. Thank you for sharing your story! I’m glad that Jax can help you through this. It’s so scary, not knowing. I’ll be sending positive thoughts to you that the tumor does not grow and that you do not need any treatment. Keep me posted, please!

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      1. Hello there. I have repeated my brain MRI and i wanted to keep you updated. The tumor remained the same size. However, the only difference was that this time the tumor did not lit up when they gave me the contrast. I don’t know what does that mean, but i hope that it is an indication of tumor stability, or better yet, shrinkage. I guess this is how jax’s tumor acted before it shrinks right? Please keep me updated if you have any news regarding that. Thank you.

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