In addition to Tuesday's visit with the GI docs, Max has had a couple of other recent visits to specialists. A few weeks ago he saw PG, the developmental pediatrician, and today he saw the pulmonary/apnea clinic. These "lung docs" released Max from their specialized care and turned him over to our regular pediatrician for observation. In addition, they recommended that we stop giving Max nightly doses of aldactazide, a diuretic. During Max's stay in the NICU he was on powerful diuretics to control his pulmonary oedema and, thus, to help him breathe. (For a stroll down memory lane, click here.) This is the first time since Max has come home that we've discontinued a medication. I left the pink bottle in the fridge while preparing the full set of tomorrow's medications tonight; it was surprisingly gratifying. I'll be very excited when we stop giving him the erythromycin: that's the medication he gets four times a day, including a vitality-sapping 2:00 AM delivery.
A few weeks ago Max saw PG, the developmental pediatrician. She graded Max as having the development of a normal six-month-old. Prominent among Max's cognitive lacunae -- according to PG -- was his failure to understand object permanence. However, Carolyn and I diagnose Max as merely being easily distracted. When a toy vanishes from sight, we think that Max still knows that it exists; however, we think Max doesn't care about it anymore and immediately starts looking for the next distraction. In a way this another milestone: When Carolyn and I first started flatly rejecting the diagnoses of a specialist. However, PG does agree that Max is easily distracted and prohibits him from exposure to television, video screens and flashing toys. That's something we completely agree with.
All of this good news has to be seen against the backdrop of Max's serious brain damage. When the NICU team brought in a pediatric neurologist to give us the bad news back in February, I remember thinking that Max would have his revenge against his doubters when he graduated from Harvard, even if he had to limp across the stage to get his diploma.
Max, however, may have recently expressed an interest in attending a different college:
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Max was born in October 2008 at Georgetown University Hospital. After more than four months at GUH, Max moved to the HSC Pediatric Center in March 2009. He came home six months after he was born, in April 2009.
Max on Thanksgiving
Max on Good Friday
Max at Home
Tummy Time
A TUBE-FREE MORNING
Start Here: A list of posts with background information
- We're home! (leaving the hospital with Max)
- The hospital at home (what it's like to care for Max at home)
- Max in action (see Max do his tricks)
- How is Max? (update April 2009)