Job posting

Wanted: High-energy, goal-driven achiever to support a young, high-growth entrepreneurial enterprise. Duties include scheduling visits by, and managing the egos of, multiple medical professionals, negotiating and manipulating interlocking bureaucracies, planning, executing and tracking complex financial transactions, and operating light machinery. Must be able to divide accurately by 43.

Max could really use a professional manager to schedule and track all of his appointments, therapists, medical records, hospital visits, insurance forms and so forth. For now, he'll have to make do with just us and our total inability to divide accurately by 43.

I'm thinking of Max's schedule because we finally had a physical therapist come to visit. The HSC team had suggested that Max receive physical therapy twice weekly. The available physical therapists in Arlington are so overwhelmed with other patients that this was the first possible appointment, and we will not be seeing this therapist again.

That said, Max had a great time, and Carolyn felt that she learned a lot of new techniques from the therapist. The therapist noted that Max's cognitive awareness and ability have outstripped his physical frailties. He isn't able to reach for the toy, but he clearly wants the toy, and this is a good sign.

Among the toys that Max really likes are, of course, his feet. The therapist at one point brought Max's feet up near his face. He reached out and grabbed them, the first time he's done so.

Secrets of the baby whisperer

Last week I was concerned that Max's run of record-breaking bottle feedings were part of the cycle described by the speech therapists, where babies do well for a few days but then suffer severe reflux pain and eschew the bottle. And we got almost nothing in Max by mouth over the weekend--maybe 20 ccs in total over two days. But the other variable was the absence of our friend D. ("the baby whisperer"). Today D. came back and Max took four bottles, for 35 ccs, 50 ccs, 50 ccs and 25 ccs. I think this marks a new personal best for Max.

Obviously, the reflux cycle isn't at work. Instead, operator error is to blame. Carolyn watched D. give a bottle today and noticed the following secrets to getting a recalcitrant, refluxy, tube-fed baby to take a bottle:

1. Keep it fun! D. sings, tickles and otherwise "gives him input" (e.g. pushing his legs)
2. Wrap him up--some babies enjoy being swaddled, and it increases their sense of organization.
3. Take plenty of breaks. Max took his feeds at the same (very slow) rate delivered by his pump on average. Getting there, however, he would eat fairly quickly, lose interest, play with toys, and then come back to the bottle.
4. Look him in the eye. My crackpot theory is that babies are attuned to faces, and it's comforting to have a big friendly face looming at them.
5. "Let him know who's in charge". (Presumably D. meant that she was in charge, but when she's not here, Max totally has us running at his beck and call.

In other news, Carolyn put Max in his bug socks in honor of the visit by the pest control man. These socks have big fun felt bugs on them and, as with anything connected to his feet, Max found them hilarious and fascinating. He spent a lot of time with his legs sticking out examining them. When Carolyn put a blanket over them he wailed inconsolably until the blanket was removed and he could again see his feet waving around.

Max plays with his feet

He has horses on his feet
Originally uploaded by andreas.lehnert

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.

Grabbing!

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.