Metabolic Appointment

We had an appointment scheduled with LB's specialists at Children's Hospital for the last week of October. It had been on the calendar since August, but it just so happened that it ended up being the day after he was released from the hospital, so the timing was pretty good.

We talked to his doctors briefly about his recent illness and how things were going (very well, by the way). They assured us that whenever he isn't feeling well and not eating, the safest thing to do is to give him IV fluids. His weight was down a bit (16 lbs, 8 oz) from where it normally is in the 50th percentile, but they said it was likely due to the illness and that they would expect him to make up for lost ground rather quickly.

The real purpose of the appointment was to get our next set of feeding instructions for him. Up until this point, we had been feeding him every 3-4 hours throughout the day (sometimes forcing him to eat if we looked at the clock and felt it had been too long) and giving him one longer 6-hour stretch of sleep at night before setting the alarm to wake and feed him. Based on his weight of almost 8 kg, we could now let him sleep for 8 hours at night and they told us that we should start treating him more like a "normal" kid during the day (i.e. feed him when he's hungry, not based on the clock). The goal by the time he is a year old is for him to eat like any other kid during the day (breakfast, snack, lunch, snack and dinner) with the addition of a hearty bedtime snack and for him to be able to sleep for 12 hour stretches at night.

Although that sounds simple, it will definitely be a mindset shift for us. I feel like we'll always be looking at our watches and trying to keep track of when and how much he's eating just because we know that he needs to eat consistently in order to stay healthy.

The 8 hour stretch at night will also probably be tough at first. He hasn't been a great sleeper at all lately with the whole teething thing, then the illness, then the hospitalization. Add to that our forced middle of the night wakings that we've been doing his whole life and I'm starting to wonder if we're conditioning him to wake and eat throughout the night instead of conditioning him to sleep for progressively longer stetches on his own. I know that lately I spend more of my nights in the rocking chair in our nursery than in my own bed. I don't say that because I'm complaining. I just say it because it is fact. I don't mind it one bit. From the day that we found out about his MCADD, I feel like it is a privilege to wake him and hold him in the middle of the night as I feed him. We are so very lucky to have him and so very lucky that the hardest thing we have to do to keep him safe is set an alarm and feed him every few hours at night. There are plenty of kids who require far bigger health interventions than he does and I never lose sight of how fortunate we are that 1) we know he has MCADD, 2) we know how to keep him safe and 3) that we have him in our lives at all. Before newborn screening, kids with this deficiency were in grave danger because they were outwardly healthy and there was no way to know about this problem until it was too late. In any event, sleeping for 8 hours sounds great, it's just going to be a bit of training for ourselves and for him to get to that point.

So, the visit went well. The doctors are very pleased with how well he is doing and how well he is recovering from his illness. We go back to see them when he is a year old!