Daxton, a Stiff-Baby Syndrome Warrior

In February of 2021, on the 23rd at 2:30 am, my sweet boy Daxton came into the world at 9 pounds 8 ounces and 22 inches long, full term and healthy, at least that’s what we thought. My husband and I didn’t start to notice something was wrong until about two weeks after his birth. 

He was very inconsolable to the point changing his diapers and feeding him made him also get upset, and he would only sleep 6 hours a day out of 24 hours – the rest he was crying. He couldn’t drink more than an ounce by mouth. He had an NJ tube for 4 months, then when he couldn’t go past an ounce still by mouth, we decided to get a g-tube. He’s been on tube feedings, physical therapy, and feeding therapy, and he will also start occupational therapy soon. 

We spent 4 months in and out of the hospital with Daxton until we finally got answers. He was hypertonic. They call it stiff baby syndrome, which is why I had such a hard time dressing him. 

He had seizure-like activity in his brain, but he also has really bad slow excessive brainwaves over the parietal lobe, which I still have to get a second opinion on currently because no one can tell me here in Spokane what is wrong neurologically other than it’s a disorder. 

He had exotropia of the right eye, Ricketts, esophageal dysmotility, severe acid reflux, oropharyngeal dysphasia, tracheomalacia, broncheomalacia, obstructive sleep apnea, abnormally smaller esophagus, and trachea, tracheal stenosis. 

We, unfortunately, are going through more as he turns 2 years old here in a month. I took him to Seattle, WA, for second opinions because he has to wear oxygen due to his sleep apnea. Still, he also has more rattling in his trachea, and no one has been able to tell me what’s going on. They want to remove his enlarged adenoids and do another scope down his trachea to see what the bump is in the airway. They think it’s damage from his very first intubation. If that’s the case, he will need 5 more surgeries to dilate, make his openings bigger, and size down the damage every two weeks. 

We are still on our medical journey, and Dax has been the strongest and happiest little warrior through it all.

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