Thursday, April 30, 2009

From January 11

Here's a video from the archives. Max is still at Georgetown, in the high-intensity side of the NICU. This video was taken during the period when Max had his NG tube pushed into his duodenum in an attempt to cut down on his reflux-related aspirations. At the time, these aspirations were seriously damaging his lungs' ability to maintain a high blood oxygen concentration.

Max can be seen pulling at his tube; in fact, later that night he would successfully pull it out.

He pulled out his NG tube here at home a couple of nights ago. Fortunately, placing an NG tube is relatively simple matter. Forcing a tube into the duodenum or further (e.g. into the jejunum) is a more serious matter, requiring skilled nurses, an x-ray and a couple of hours.

I may try placing an ng tube into my own stomach just to see what it's like.

Tuesday, April 28, 2009

Meeting with the early intervention team

Carolyn and I felt a little unmoored after we left HSC. We went from being around doctors and nurses all day to managing Max on our own. Looking back, I see that I always thought about "the NICU team" or "the HSC team". Going from a team sport to an individual event was a little daunting. After meeting with our pediatrician yesterday and the visit by the county early intervention staff today, we're starting to see the new team assemble.

When thinking about where to live, we never considered the county's support services to families of infants with special needs. Arlington seems to have a pretty good program although, unlike similar programs in Maryland or DC, the services aren't guaranteed to be free of charge. There's an interesting research paper here, given that the overwhelming majority of families who need these services don't choose their location based on the price or quality of the services.

The county sent a specialist case manager and an occupational therapist from a third-party service provider. Max put on a major charm offensive for them. The occupation therapist, J., told us that, based on reading Max's chart, she expected a kid with many more problems and a grimmer outlook than Max presents in the flesh. I asked J. what the major pitfalls are for us down the road. Interestingly she skipped right over medical mistakes, infections and so on and identified "parental stress" and "aversion conditioning" as the two biggest threats. The first I can understand. The second is more interesting. Both children and parents can begin to associate feeding, therapy, and any changes to their routine as painful. Children can develop oral aversions as well as aversions to physical exertion more generally. Parents can be overcome with inertia and reluctant to try new things.

J., like lots of other medical professionals we've worked with, focused on lots of positive signs she sees in Max. However, she was also quite blunt and forthright about Max's problems and didn't hide behind jargon to camouflage bad news. In effect, she told us that we've bought a house in the nicest neighborhood in Philadelphia. I've always liked Philadelphia.

Max plays with his feet

Our friend D ("the baby whisperer") got Max socks with bells and pictures of horses on them. We put them on Max this evening for the first time. He's a boy who has always been interested in his feet. With the addition of wild animals, Max now finds his feet irresistible toys. In this picture, he is holding his legs up, something that requires at least some muscle tone in the trunk. It's a positive development.

Monday, April 27, 2009

We've survived 4-1/2 days!

What's it like running a hospital out of our home? A week ago we would have been paralyzed by the complexity of the equipment, feeding schedule and so on. But we're getting the hang of it.

It certainly feels as if a lot more time has passed since we brought Max home. But it seems that time has not actually slowed down--we're just savoring each second individually, without the soothing balm of routine to make time go by more quickly. Each moment brings a new, and often exciting, incident or challenge.

We are, however, slowly figuring out how everything works. We're making fewer mistakes with the complicated regimen they sent us home with. I'm collecting pictures of the various pieces of technology that we've now mastered so I can put together a guide to the hospital at home.

A couple of nights ago, Max ripped out his ng tube while I was lying next to his crib. I didn't notice for a while (Max actually seemed more comfortable and his monitor didn't go off). But I did eventually catch it, and Carolyn and I successfully reinserted the tube in the deep pre-dawn darkness. Max seemed to take it all in stride.

Carolyn and I took Max to the pediatrician for his first appointment this morning. We brought the pump in its cunning little backpack so he could get a scheduled feed. A little girl in the waiting room commented that "that baby has a band-aid on his nose". He does indeed, and will for the foreseeable future. It was actually a little shocking to see babies without feeding tubes, oxygen and monitors. This was our first public outing with Max; the public reaction wasn't anything I had thought about. There's a breakfast place in the ground floor of the pediatrician's. Carolyn and I dropped by with Max: we had the french toasts, Max had a smiling contest with the waitresses.

Friday, April 24, 2009

Stethoscopes have an "off" switch

Our first full day home with Max went by in kind of a blur. The simple fact of having him home is still a constant surprise and novelty. We were nearly overwhelmed at first by the complicated medication and feeding schedule that the medical team devised to manage his reflux. Max's reflux has really flared up since we got home. At one point, we became convinced that his feeding tube was in the wrong place because when we puffed air through it, we couldn't hear the tell-tale "woosh" through a stethoscope. We stopped his feeds and meds and waited for the home-care expert nurse to come over. She showed us, among many other useful and interesting things, that stethoscopes have an "off" setting. When used properly, we found that, indeed, Max's tube was in the right place.

When I looked at the calendar today I realized Max and Ada were born exactly six months ago. They were born on one of the last warm days of the fall; Max came home on the first warm day of the spring.

Thursday, April 23, 2009

We're home!

We made it home! We found Max at HSC this morning ready to leave:
Max at HSC

As I was changing Max I noticed something he wouldn't be needing:
No ID bracelets where you're going

Carolyn and I practiced placing a feeding tube up a baby's nose on a practice doll. Then I did it for real. It was certainly interesting. I put the new feeding tube in the other nostril. Carolyn carefully wiped away the accumulated adhesive from the tape that had held the previous one in place:
Playing at HSC

And then it was time to leave. (Actually, I'm skipping over a lot of steps, but the HSC eventually let us go.) We loaded Max into the car in the HSC parking garage:
The HSC parking garage

Max was very interested in the new sights and sounds during his drive home:
Driving home

And then we were home:

Tuesday, April 21, 2009

The excitement builds, and spreads

I've noticed from watching Felix that when children experience strong emotions, including generally positive emotions like happiness or surprise, they often break into tears. My theory is that children lack perspective: their first time down a slide alone might very well be the actual most exciting thing they've done in their whole lives. I think I can relate. Max's imminent arrival--this Thursday!--has set my mind racing through all the unknowns facing us, and, seriously, how can I have the proper perspective?

What kind of feeding technology will he be on? (We only know that they've ordered a different kind of pump than the one we used two nights ago at HSC. You know, the one that required ticklish maintenance every 70 minutes, all night long.) How will we do feeding Max by mouth? How will we monitor his hydrocephalus? His wedge doesn't really fit in his crib--what if we put it in a pack-and-play on the floor? How can we elevate one end of his crib to simulate his hospital bed? And on and on and on.

Felix is obviously picking up on the waves of nervous energy that Carolyn and I are giving off. Today he complained about phantom pains in his legs, feet, and, um, "bum". Could this be a dire childhood illness? When he forgets about it, he walks just fine. And then there are the sudden crying fits. I know how he feels. Tonight, as his bedtime book, he selected I'm a Big Brother.

No doubt if our cat was still alive, she would be acting out too. It's just as well that we don't have to contend with turds left on our pillows on top of everything else.

But of course, Max is the one who has done all of the work so far. I think back to Max's first few days, and his many subsequent brushes with disaster over the past six months. From that perspective, his move home might be just a small step.

Max in his second day of life:
Max and Cj's finger (closeup)

Monday, April 20, 2009

Our night in the family apartment

Carolyn and I spent the night at one of the "family apartments" inside the HSC. These are fully functional apartments--kitchen pictured here--where families can practice giving all the care that the HSC patients will need inside a hospital, where help is just a shout away.

Last night, Max had his food provided by a hospital pump: The pump delivering milk through his tube had to be replenished every hour and 26 minutes. Although the actual process wasn't difficult, there's something about having one's sleep interrupted at the 70 minute mark that is uniquely disturbing. Thankfully, we'll be taking him home with an arrangement that doesn't need such frequent adjustments. It was kind of fun for a one night. After a week of this, I could see myself making more and more mistakes.

In addition, Max was on a full set of monitors. A friend described the monitors this way: When the alarm sounds your baby is either in serious danger, or he moved slightly in his sleep. Last night, Max's alarms went off fairly frequently--I'm sure he found the familiar tones and beeps soothing. Perhaps in time we too will become inured to them.

But really, the thing that interfered most with our sleep last night was Max himself. He was extremely cute throughout the night. He dropped off to sleep around 8:00 PM (before I got to the hospital in fact) and didn't wake up again until 6:30 AM. He seems to be a very active dreamer and was waving his arms and legs around, mewling and smiling frequently in his sleep. (Babies practice facial expressions in their sleep.)

Sunday, April 19, 2009

The family apartment

This place is nicer than any apartment I've ever lived in. Max is sleeping soundly on his wedge. Carolyn & I are whispering but it struck us that this is the very quietest that Max has had it in his whole life. We're not about to set off a klaxon to test Max's tolerance however.

Spending the night at HSC

Carolyn and I will spend the night with Max in the family apartment at the HSC. We're excited but also nervous. Tomorrow we will still be excited, hopefully less nervous and probably more sleepy.

Saturday, April 18, 2009

Di & Max

Di & Max
Originally uploaded by andreas.lehnert
Seen here, Max makes a new friend. After a vigorous physical therapy session, Max took a long nap on Diane. At the same time, Carolyn worked to make the arrangements to bring Max home. Inertia alone could keep Max at HSC for another month, but Carolyn is pushing through all the bureaucratic obstacles.

Wednesday, April 15, 2009

Facing up

Physical therapist M. has told us several times that if Max's overall tone is set to improve, we will notice improved head control first. Tone spreads from the head down. Max has severe reflux because he has a tone deficit: his brain can't communicate with his stomach and esophagus to tell them to work properly. But the esophagus and throat are far away from the head. We're waiting for Max's head control to improve before we starting hoping for significant improvement in his reflux. Not to mention, of course, that we might then also see some broader improvements. And that's why the physical therapists are so focused on Max's ability to control his head.

Carolyn had a lot of trouble getting to HSC this morning: road closures, accidents and the weather conspired to make the commute even longer than usual. When she arrived, she found the attending, Dr. Y. and physical therapist M. quite worked up. Max had picked up his head and looked up during a PT session. Speech therapist L. was there with her camera and captured a few shots of Max facing up. By extension, Max was also facing out, facing out of the HSC, facing out at his life.

In that vein, moves to get Max out of HSC are accelerating. The current timeline has him home on Thursday, April 23, 2009. The prospect of Max's impending homecoming has us scrambling to prepare for him. Long ago, we set up his room in anticipation of his arrival. Since them, it has gathered dust and suitcases (now once again banished to the attic).

April 23 will be Max's 181st day of life, making him almost exactly half a year old. It is also William Shakespeare's birthday. An auspicious day.

Here is a picture captured by speech therapist L. of Max facing up:

Max lifts his head

Tuesday, April 14, 2009

The countdown begins

Carolyn had the first really concrete and serious conversation with the HSC team about Max's release data. Two forces are converging: Max's improving robustness and overall condition, and the HSC team's belief that Carolyn and I can understand and carry out the complicated feeding regimen that Max is on. Rather than wait for Max to move to a simpler regimen--one carrying fewer risks should we make mistakes--the HSC team are willing to take a chance on our diligence and attention to detail.

Although like any time line this may skip, Max may be home 10 days from now. Much depends on how he tolerates the slight tweaks to the feeding plan that they're proposing, and there are a few other variables in plan that might push Max's release date back a few days. But, barring major complications, he will be home by early May.

Monday, April 13, 2009


After a very deep sleep on me following his noon bottle feed, I had a play session with Max involving bicycling his legs, reaching for toys with him on his side while flexing his abs, etc. As part of our play sessions, I've noticed that Max loves to be tickled and kissed on different parts of his body. He gets a huge smile on his face and even laughs. When I was bending over him today, I felt a tug on my hair: Max had grabbed a handful and was pulling! Thinking this might have been an accident, I gave him another opportunity and he did it again. Very exciting. I've noticed over the past few days that he is doing a better job grasping, opening up his hand, then clasping whatever is in it and holding on for a good while. He also wants to bring things to his mouth.

Max's feeds are now compressed over 20 hours (at a rate of 34 ml/hr), so he is getting four hours of a break at some point each 24-hour period. We are still trying to figure out exactly when that will be. We did get his vitamins changed to evening, when he is more likely to be asleep and less likely to spit them back up. Throughout the coming days, the HSC team plans to compress Max's feeding further, if he will tolerate it. While Max does have some emesis throughout the day, the doctors think that in general he is tolerating the NG tube and that he is gaining weight appropriately (he now weight about 13.5 lbs). The GI docs from Children's will assess Max on Tuesday and weigh in with any additional advice on the plan.

Max continues to be a social being: he just wants to see faces. The nurse tonight reported that after I left, Max sat in his stroller by the nurses' station for about an hour, until he had his bath and fell asleep for the evening.

Sunday, April 12, 2009

From a few days ago

Here Max is on the lap of our friend D. ("the baby whisperer"). He fell soundly asleep just like this.

Training dolls

The doll on the left is named "Kevin" for reasons unknown. It has been in the family for quite some time. The doll on the right was a gift from Max's friend N., the child life specialist at HSC who arranges the sibling summit meetings. It's a normal doll except the N. has attached a realistic feeding tube. We're trying to teach Felix not to pull on it (Max does plenty of that on his own).

Easter Sunday at HSC

Carolyn spent a half-day at HSC. She reports that it was quiet and empty--a big change from yesterday's crowded scene. Max had another in his string of good days. He took 30+ ccs from a bottle and only vomited back a mouthful without other incident. When Max comes home, we'll have to watch out that he doesn't aspirate (that is, inhale) his reflux.

As shown in the attached picture, Max grasped his rattle well, and even managed to get his other hand onto it a few times. He also seemed to be making progress in getting it to his mouth, which was clearly his intention.

When Carolyn left, Max was in his stroller talking to two fellow patients in his ward. Although their conversation appeared quite animated, nurse Y. reports that Max fell asleep and didn't keep up his end of the conversation.

Saturday, April 11, 2009

Max in his grandmother's lap

Max at HSC
Originally uploaded by andreas.lehnert
Here's a picture of Max in his grandmother's lap. Something about this picture reminds me of Max's older brother, which in turn makes me feel quite clearly that it's well past time for Max to come home.

Max gets a new toy (and some more visitors)

Max had a visit from his paternal grandparents today. When we arrived, the HSC was packed with families visiting. Max's room is full of babies to begin with, so there was quite a crowd and a festive mood.

My theory is that grandparents are more relaxed than their children, and this explains why they're so much fun to be around. Whatever the reason, Max really got into the spirit of playing with his grandparents. He was smiling and waving his arms around, and was particularly happy to see a new toy arrive. Then, during a vigorous game of piggy ("this little piggy..." etc), I heard Max making a kind of rusty, whistling sound. He was laughing. And with good reason: it was hilarious. But I don't think I've heard him laugh before. He also started making a few other sounds--the very first "goo goo"s I think he's made.

I tried feeding him at 3:00 PM but was notably unsuccessful. Max (and his dad) may have been a little worn out from all of his new tricks. Also, he spent most of his play session flat on his back, which can be a little hard to tolerate. Whatever the reason, he took relatively little from the bottle and vomited it all, and more, back up.

Friday, April 10, 2009

Max's many visitors

Max had a wonderful day. In addition to his many visitors (see below), physical therapist M. reported that he demonstrated a couple of key skills, such as lifting his head, at his morning PT session. True, he only picked his head up once, but, well, it's a big head and probably pretty heavy. M. has told us many times that tone flows from the head down. If Max is going to figure out how to put his brain in touch with his body, we'll see the evidence starting at the neck and then progressing downward.

Felix, Carolyn and our friend D. (aka "the baby whisperer") came to visit Max today. This is part of our continuing campaign to prepare Felix for the arrival of his little brother and, of course, to introduce Max to his big brother. As with previous visits, Max and Felix met in the neutral ground of HSC's playroom, a pleasant and airy room on a corner:
Max at HSC, with friends

Here, Max is staring at his brother and D. Notice that he is looking to his right, something that is a little more difficult for him.
Max at HSC, with friends

Felix did extremely well. He finds the HSC a friendlier place than Georgetown's NICU. And no wonder--the HSC has much better toys:
Felix on the phone

Carolyn took Felix outside to the excellent HSC playground to blow off a little energy. D. spent the time getting acquainted with Max. While Max has been evaluated by scores of medical professionals, whose judgment we value and trust, we put a lot of weight on D.'s opinion. She has worked with many children. Carolyn asked her what she made of Max. D. said that even a brief interaction was enough to point out the differences between Max and Felix. At this age, D. said, Felix was a serious child. Max, she said, was much sunnier.

Max, smiling

Thursday, April 9, 2009

Max loses a little weight

Nutritionist S. has just one mission in life: to make sure HSC patients get sufficient nutrition to gain weight as appropriate. She told me once that she doesn't care how they get it (bottle, NG tube, NJ tube etc), so long as she can control the volume and nature of the food going into the child. She views babies as machine for converting food into weight/length. She's been quite happy with Max's progress, and she was dismayed to report that Max had lost weight over the previous week. She will redouble her efforts, including further fortifying his milk. It's nothing serious, of course. S. will increase Max's calorie intake.

Max continues to do well on his NG tube feeding. So far as we know, he hasn't thrown up all day today. And when you find yourself writing a sentence like that, you know you've spent way too much time in a hospital.

Wednesday, April 8, 2009

Sleeping with his eyes wide open

The HSC team compressed Max's feeds to 22 hours today. They seem very happy with how he's doing, even though he vomited a couple of times today. We're less enthusiastic about Max's progress because Carolyn reports that he's clearly in some discomfort. The HSC team were braced for much worse, though, with the dietitian saying that she had expected Max to be vomiting 60 ccs a day. With that possibility in mind, a little discomfort doesn't seem so bad.

Max also saw the ophthalmologist today. His eyes have been quite inflamed for the past week. Of course, this morning, when he saw the eye doc, his eyes were clear for the first time in several days (by the afternoon they were again pretty red). The inflammation appears to be related to an upper-respiratory tract virus that Max has been fighting for a while now.

The ophthalmologist cleared up a few other mysteries, however. First, Max's Georgetown records sometimes record him as suffering from ROP (retinopathy of prematurity). According to the doc, there's something called "ROP stage 0" which is perfectly normal. He assured Carolyn that Max doesn't have "real ROP" and won't get it.

We also learnt something about Max's disconcerting habit of sleeping with his eyes slightly open. This is not a problem; for example, it's not a sign of neurological defects as we had considered. It's also not all that uncommon. We're told it's genetic. Carolyn and I haven't noticed any sign that we sleep like this. Perhaps one of Max's uncles does?

Tuesday, April 7, 2009

Feeding trial, day 2

Max continues to tolerate food going to his stomach well. He hasn't shown any signs of reflux-related distress, such as arching his back or making chewing motions with his mouth. Max continues to take bottle feeds quite well, although he vomited all of his noon feeding back up. At the moment, Max is getting a very slow, continuous drip into his stomach. The next step is to start compressing his feeds. Tomorrow is the first compression, with the HSC planning to reduce the time over which his daily food intake goes in to ... 22 hours. The HSC team only take gradual steps, something we appreciate after some of the more rapid changes that overtook Max at Georgetown.

The HSC team have repeatedly asked Carolyn not to be unusually gentle with Max during this feeding trial. The NJ tube has been a big relief because it effectively ended the risk that exercising or playing with Max would cause him to vomit. Back when he was getting scheduled NG feeds, we would have to treat him gingerly for an hour afterwards. Because the current NG feeds are stretched out over a long period, Max seems unlikely to vomit in response to exercise. However, having the tube hooked up all the time is kind of a drag.

Carolyn took the suggestion to heart and had a vigorous play session with Max today. She put him on his tummy to help him practice turning his head. Instead, he raised his head up to look at Carolyn. Head control is a major challenge for kids with CP, so we were very happy to see Max show signs of improvement.

Monday, April 6, 2009

Napping, with octopus

Max just after a physical therapy session. He's absolutely exhausted and asleep. Or is he? Close examination reveals one eye cracked open to monitor his surroundings.

The tube comes up

Max tipped the scales today at 5.9 kilograms, or 13 pounds.

The next move on the reflux front was put into motion today, with the nasal feeding tube being pulled up from Max's intestine to his stomach (so now it is once again a nasogastric or NG tube). To start with, Max will receive continuous feeds through this tube over a 24-hour period, at a rate of 27 ml per hour. This is much slower than the rate he was tolerating only semi-well when he came to HSC over a month ago, when his feeding rate for bolus feedings was about 80 ml/hr. The idea is to compress the continuous feeds down to shorter time periods and faster rates, as has been tried before. The hope is that because Max is a little older and because his esophagus may have matured enough, the reflux will prove less of a problem. I think it is unrealistic to think that it will be completely gone. The question is just how much of a problem it is in terms of the frequency and volume of emesis, his level of discomfort, and any danger of aspiration. We'll see what the coming days bring. For most of today, Max did fine, tolerating PT well even while the feed was going in, and taking his usual 20-30 cc by mouth from the bottle. He did have some emesis toward the end of the day. [I'm beginning to think that the sight of my coat makes his reflux worse, because he often has emesis just when I'm headed out the door.]

In non-feeding news, Max had a great day. He was very alert and smiley. He enjoyed reading The Very Hungry Caterpillar, Brown Bear Brown Bear, and I Kissed the Baby; shaking his barbell rattle with each hand; reaching for Messrs. Fish, Octopus, and Moose; doing some abdominal/pelvic crunches; and taking a couple of good naps on me. He also had a great PT session, where physical therapist M. observed that he is getting better head control and is strengthening his abs. Abdominal strength is important for getting reflux under control, but it has been a catch-22 because doing ab-strengthening exercises also upsets his stomach and causes him to reflux.

When I walked in this morning, the nurses and therapists and assorted other HSC staff were all commenting on how HAPPY Max had been all morning. His nurse today, W., had not seen him since he was admitted to HSC. She was gushing about how much he had improved, and how much happier and more alert he seemed to her. I agree.

Sunday, April 5, 2009

The smile code

Carolyn spent the day with Max--I had another all-day meeting to attend. She reports that Max was extremely smiley. We were debating whether he smiles more at this age than Felix did. We think he does, although it's not clear why. Maybe Max thinks he has a lot to be happy about.

Max kept down all three of his feeds today, good news on the eve of his feeding trial. When Carolyn starts to feed Max she reports that he is often quite disorganized. However, when given a finger to suck on he calms down and concentrates on eating.

As a side effect of the feeding trial, we probably won't be able to play vigorously with Max, so Carolyn took advantage of the current situation to take him to the playroom for a workout. He didn't enjoy tummy time very much, but he did well trying to roll over. Carolyn reports that he still has a little cough, but that it might be a bit better.

Tomorrow the HSC team starts his feeding trial with a continuous slow drip into his stomach. If he tolerates this, they will start compressing the feedings. We look forward to seeing whether Max's reflux has improved over the past month.

Saturday, April 4, 2009

The training table

It was another one of those very rare days when Max didn't see either of his parents. (I was trapped in a conference and Carolyn spent the day with Felix.) The reports from his nurses at HSC continue to be encouraging, although they now notice Max's mystery cough. Carolyn has heard Max coughing for several days, but he always brightens up when a nurse or doctor comes into view. The HSC weekend attending examined Max, who stopped coughing the instant a new grownup came into view, of course. She declared that Max's lungs sounded clear. Thus, it's not likely pneumonia or new lung damage related to aspiration. Google tells us it could be RSV, despite Max's monthly vaccinations (each month's RSV shot costs more than $1,000--seriously). If it is RSV, those shots produced a pretty poor return on investment but still better than the stock market of course.

We're watching Max's bottle feedings carefully. On Monday he begins his gastric feeding test. The HSC team will pull his feeding tube back out of his jejunum and into his stomach. If he doesn't start vomiting up a significant amount, they will try to compress the feeds into a reasonable amount of time---normal babies can take in a decent amount in 20 minutes or less. In the past, Max never really tolerated anything faster than an hour. If he passes his gastric test, he comes home with an ng tube. If he fails, he comes home with a less good option, probably an nj tube. Max took 20+ ccs at each of his oral feedings today, and vomited none of it back up. It's a long way from handling that to tolerating 650+ ccs, but it's a straw in the wind that maybe he'll do okay.

Friday, April 3, 2009

Max enjoys kicking

When Carolyn phoned the HSC for the regular 3:00 AM update, she learnt that Max had just woken up and was kicking, which appears to be his new hobby. Strangely, the prospect of a daily 5:00 AM wakeup call (the schedule as I understood it yesterday) is sort of frightening, I actually think the 3:00 AM call will be sort of fun. After all, that's the one hour of the night where absolutely everyone is guaranteed to be asleep, except, of course for Carolyn.

Max had another back-to-back PT/OT session in the playroom. Therapists M & H said he had a good time, and was in better spirits than yesterday. M said that Max is doing much better controlling his head. Carolyn notices that Max does better with his physical coordination when he appears to pause and concentrate on his next move. He may be thinking through the nerve impulses required to activate the muscles he needs.

Here is a video of Max kicking and enjoying himself:

Thursday, April 2, 2009

Max's sleeping schedule

With the prospect of having Max home now quite real, Carolyn and I have become keenly interested in Max's sleeping schedule. At Georgetown he had his days and nights backwards, probably because the night shift were able to lavish him with attention. The HSC staff report that Max goes to sleep around 8:00 PM or so and wakes up around 5:00 AM. I don't know whether that's good or not. A 5:00 AM wakeup calls isn't anything to look forward to, but there are worse alternatives.

Carolyn checked out one of the HSC's "family apartments" today. These are fully functional apartments where parents and siblings can practice caring for an HSC patient before bringing them home. Families pretend to be at home, coping with the needs of their child on their own, but do so inside the HSC, with help only a shout away. Like everything else at HSC, the family apartments are marvellous--easily nicer than any apartment we've lived in.

Wednesday, April 1, 2009

Felix visits again

I got into work ridiculously early this morning, so I took the opportunity to talk to the HSC attending. One reason I could never be a doctor: Getting to work at 6:00 AM is brutal enough. Sounding perky on the phone at such an insalubrious hour? Impossible. But the secret to getting a doctor's attention is catch them early. I talked to Dr. Y. about our fear that Max was facing a long period of institutionalization. She assured me that she thought Max would be home in a month no matter how he does on his upcoming feeding trial. The HSC's decision to discharge patients depends ultimately on their determination that the children have a feeding regimen appropriate to their home environment. It's sort of remarkable if you think about it: they won't discharge infants who need a complex and potentially dangerous feeding regimen unless they think the parents are capable of handling it. Although I think we're on safe ground with the HSC team, I'm going to watch my step around them and cut back on the smart-aleckness.

In other news, Felix paid a return visit to the HSC and Max. Once again, the protocol secretaries worked overtime to provide both potentates with a positive and stimulating experience. Felix and Max had a great time in each other's presence (hard to say that they played "together"). Max's friend N. (secretly: the child & family life specialist) brought a bubble blower to the playroom and Felix got to blow bubbles inside, something not normally allowed at home. Max looked on with great interest and smiled encouragingly when Felix lugged over the resident stuffed dinosaur toy, which loomed over Max's stroller like Godzilla over Tokyo.