In the spirit of setting up Max’s story, the series “A squish is born” is intended to highlight the adventure we had from 2016-present day. The irony of having a lull in Max’s care when the rest of our world felt crumbly is not lost on me. I am a firm believer in the Universe and Universal intervention, and I know that we could only handle what we had in front of us at the time.

Recently, at an audiology appointment for Max, I asked the Dr to explain what she had said to us multiple times, and I repeated it back to her to make sure it made sense in my brain. In the early days of tests and diagnostic appointments, I never felt comfortable enough to say, “WAIT!!!!!!!!!!!”

While the medical staff was likely trying to soften the hard edges of Maxwell’s possible truth, we were told he could grow out of “this”, or that maybe “that” will shift or change and spent more time there than we expected. As we have risen out of the stress swirl we were sucked into, we recognize that Max will always need medical care, support, and intervention.

From “a squish is born” to “the beginning of the middle”, it has been my dream to write about our story. When the nasty voice of the ego chimes in and tries to steer me away from sharing, a gentle voice reminds me that I can tell our story. All those years of journaling and creating short stories in my head turned into a craft. Writing about Max, our experience, being a human in this world, that is my craft. Storytelling is how generations pass on legacies; it’s how cultures become rich, vibrant and eclectic.  

I am sharing our story to create the space I was looking for when the depths of Max’s reality were emerging. I remember so many hours of scrolling, hoping I would find a blog, or social media account that I could resonate with. I was desperate to see my story inside of someone else’s. And that is exactly what I am creating. A space for you to see your story inside of ours and with that, learn that you are not alone. Maxwell’s health teeters somewhere in the middle, next to his disability and his reality. We live our lives in the middle now and our survival will be a road map for others.

The following is the medical report I submitted to Max’s school team for his most recent parent/teacher meeting. I update this every year and will elaborate on what I do to prep for these meetings in another post.

Maxwell Nadeau, medical update

February 2025

1. Spina Bifida: Dr. Martin, CCMC Neurosurgery
   1. Tethered cord syndrome – evaluation began 8/2024, updated MRI shows nothing new or emergent, next apt: 3/24LipomyelomeningoceleOccult spinal dysraphism1^st de-tether surgery May 20182^nd de-tether surgery January 2019, Stent placement for syringomyelia, mobility, pain, and growth monitored annually with MRI imaging, cord remains tethered in “S” region of the spine
   1. unknown/limited feeling in bottom of feet

• Unspecified hearing loss: Dr. Grindle, CCMC ENT / Dr. Adil, Boston ENT
  • Left side –hearing evaluation and tech adjustment:  2/26
  • Hearing aids bi-laterally

• Bi-lateral iris colobomas: Dr. Pablo A Altschwager Kreft, Boston Children’s
  • new glasses and script Oct 2024
  • Left eye vision astigmatism, vision impairment
  • Retinal pigmentary changes

• Dysphagia and reactive airway disease: New provider, CCMC
  • Pulmonary function test and follow up: 4/3/25
  • Swallow disorder that could cause aspiration pneumonia
  • Bronchomalacia, congenital

• Neurogenic bladder: Dr. Dudley, CCMC Urology
  • Detrusor sphincter dyssynergia
  • Overactive bladder
  • Decreased capacity and muscular strength
  • bi-lateral duplicate collection system
  • Incontinence – Max is going to start CIC March/April 2025. Currently the protocol is every 4 hours. Next apt 3/6/25

• Pelvic floor dysfunction: Dr. Baker, CCMC GI
  • Chronic constipation; bowel dysfunction
  • Next apt 3/21/25

• “Epidermal Nevus”: Dr. Cheng, UCONN dermatology
  • eczema
  • Next apt 6/1/25
• Unspecified kidney disorder: Dr. Mason, CCMC Nephrology
  • Currently testing high levels of protein in urine

• Sleep apnea (two different sleep studies, with two different results)
• Unspecified genetic condition: Dr. Sacharow, Boston children’s: apt 6/2024 (genetic anomalies: bulb fingers, webbed toes, third nipple, incomplete coccyx bone)

The middle is where I have to be because all of that ^ is a lot to remember.

Thank you for being here.