How to Communicate with a Henry

Hard to believe Henry turns two in a month. At present, he’s incredibly active and loves to climb anything and everything he can get his hands on. His preschool teachers tell us that, while he’s the smallest kid in the toddler room, he’s the only one who will climb the jungle gym on the playground.

Developmentally, Henry has been diagnosed with a bit of a speech delay and the language skills of a 9-month-old. As such, he has begun weekly speech therapy sessions to help him better communicate. He knows one word pretty well though:

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He’s Mobile!

Just put his older brother in front of him, and Henry takes off. He’s doing super great, hitting milestones left and right!

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Henry’s Homecoming

Dear Henry Fans,

Would you have thought 12 days ago that Henry would actually be at home this soon? Neither would we, and we’re overjoyed to report that Henry spent all afternoon snuggling with Mom, Dad and big brother Audie.

One last specialist
We met one last time this morning with Dr. Nelson, Rush Hospital’s “baby whisperer” who assesses neuropsychological development in children. He’s met with thousands of newborns to administer a “Brazelton Assessment” (more info at http://www.brazelton-institute.com/intro.html), a series of stimuli used to identify a baby’s strengths (reflexes). Dr. Nelson will tell you that a child’s strengths ultimately predict its future capabilities, and he liked what he saw with Henry...

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Baby Henry: Coming home

Hi Everyone,

If this weekend goes well, you can expect to hear from Henry live from his house on Monday. That’s right: Henry’s coming home.

Tubes out
Today, Henry’s medical team removed his last remaining tube. He no longer requires assistance with nutrition or fluids, and looks like a normal baby now.

Little piglet
Henry has really taken to eating. The medical team wants to see him eating 40 mL per feeding, and he took down 60 mL at least twice today. Like any newborn, he promptly passes out once he’s done.

Specialists
Because of his rough start last week, a physical therapist from the hospital met with the three of us today. They’ve started Henry on a brief physical regimen to make sure his arms and legs develop normally. We also met with Rush’s “Baby Whisperer,” child psychologist Dr...

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Baldy man

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Finally got the EEG leads off. Check out the baldy!

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Henry’s MRI results

Dear Henry Supporters,

Put on your reading glasses and pour yourself a glass of milk (or Scotch) for another lengthy update on Henry. Executive summary: today was another good day, and the doctors think he might be home sometime next week.

MRI results
The incredibly talented pediatric neurologist we met with, Dr. Romantseva (http://youtu.be/A68Y3J9Ktb8), gave us some “good” news today. The short version is that the MRI showed mild damage to Henry’s brain. He sits far from the worst case scenario of babies who experience HIE events, and for that we are incredibly thankful. “Mild” is the best we could have hoped for, and we believe today’s results are to be regarded as positive news.

Dr. Romantseva walked us through the three major findings from the scan itself:

  1. Posterior hemorrhage – the M...
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Meet Dr. Silvestri

Meet Dr. Silvestri, the Clinical Director of the NICU at Rush where Henry has been for his first days. She’s the superstar who spent all night in the NICU (9pm until at least 3am that we saw) the night Henry was rewarmed. Dr. Silvestri is but one of the many brilliant doctors taking care of Henry.

She’s the one who let out a gleeful “Wow!” when she first saw Henry and his vitals immediately after the cooling system was disabled at around 2am Sunday.

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Henry had a good day

Dear All,

You will be happy to know that Baby Henry finally had a good day. While he certainly faces a very long and arduous journey, let’s take a minute to celebrate days like today. Read on for (a lot) more details.

MRI today
Suffice it to say, scheduling a five-day old on a ventilator machine to be scanned by a machine that explicitly prohibits anything metal makes for a logistical nightmare. As such, Henry didn’t even make it to the MRI machine until two hours past the original scheduled start time. The actual scan itself went well for Henry: he stayed still and didn’t react negatively to the anesthesia.

The preliminary interpretation confirms what Henry’s doctors originally believed: the oxygen deprivation at his birth did, in fact, result in areas of brain ischemia (http://en...

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Testing out the lungs

After getting his tubes out today (ventilator came out, as did the suction tube), the little man finally got to test out his lungs.

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Henry the Hulk: A Video

Henry’s back from his MRI and still tries to yank his tubes out of his mouth. The boy cannot be contained.

 

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