Evening Update (Monday 2/16)

With Max's hydrocephalus acting up again and his difficulty moving his bowels, Carolyn and I are once again marking each day as good or bad depending on his nightly head measurements and poop journal entries. On that basis, today was a good day indeed, with Max's head circumference down 0.25 cm from the previous night and Max delivering his first bowel movement since the NICU team switched his diet to the neocate formula.

Max was enjoying his new big boy crib when Carolyn arrived. It's like the McMansion in a neighborhood of 1930s cape cods. Max's crib looms over his neighbor's. However, the extra room finally relieves the overcrowding caused by the wedge. Now there's room for the wedge and for Max to lie flat. Nurse N. redecorated with a vengeance, putting up all the photos and pictures we've brought in over the past four months.

Dr. P., the peds GI specialist, talked to Carolyn today and told her to expect continued sticky, dark stools while Max is eating neocate. She said that Max's phlegmy cough, often heard just before he vomits, might be a sign of an allergy. I was shocked she didn't say that excessive phlegm is associated with neurological problems.

Max's feedings are now compressed to 60 minutes, and the volume is up to 80 ccs. Max continues to vomit once or twice a day, but the NICU team appear unconcerned. He handles himself well during these episodes, and he usually looks more comfortable afterwards.

The NICU nurses have become zealous about feeding Max with a bottle; nurse M. reports that Max took 20 ccs by mouth tonight before getting very sleepy. Max's new-found interest in using his mouth has all happened since the speech therapists went home on Friday. Today was the first time that speech therapist S. was able to watch Max eating. She was broadly positive but not effusive; she noted several areas where his technique required improvement. The NICU attending and fellow (who had also taken the weekend off) were more visibly excited, with Dr. R. saying: "I can't believe this is the same baby from last week." As I told Carolyn, this means that we'll have to bring Max back in a year so they can say "I can't believe this is the same kid from last year."

In addition to a session of speech therapy, Max also had visits from an occupational therapist (they "help with the business of being a baby") and our friend physical therapist A. At this point in his life, Max's occupation and physical therapy will be broadly similar. Presumably when he gets to shop class in high school, occupational therapy will be fairly distinct.

Carolyn talked to A. about some of the physical symptoms we've obsessed about since Max's last head ultrasound. I was convinced yesterday that Max's leg muscles were extremely tight, signalling hypertonicity and a possible early sign of CP. A. thought his leg muscle tone was appropriate. The head phrenologist thought he saw indications that Max was sundowning; that is, that Max's eyes were fixed staring down, another symptom of neurological damage. Ever since he dropped this little observation, Carolyn has been wondering if she can see it in Max too. A. saw absolutely no signs of that. Indeed, Max was alert and happy while working with A.

Finally, A. showed us a neat physical therapy trick. When a baby is lying on his back with his arms extended, you can stroke his outer pectoral muscle and he'll bring the arm in on his own. I'm going to try this on Carolyn tonight to see if it works on adults.