Musings of a Marfan Mom

Baby J’s 6 Month Checkup

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Today was Baby J’s 6 month checkup, and it gave me a lot to think about. He’s measuring at a healthy 27” (75th percentile) and a smidge over 16 lbs (just under 50th percentile).

I love our pediatrician, but she got on my case about J’s eating and it was entirely illogical. She said since his weight has leveled off (he’s gained maybe 2 lbs in the past 2 months) she’s a little concerned about him getting enough milk. In the next breath, she said he really has to stop his nighttime feedings.

So wait…he’s not getting enough food, but I should quit feeding him?

She then went on to say I really need to start feeding him purees, preferably rice cereal, before bed. Let’s think about this. Rice cereal has no nutritional value. It has fewer calories than breastmilk. And at this age, solids are meant for tasting and experimenting, not for substance. If she were really concerned about J’s weight, she’d suggest I nurse him more and do fewer solids. (We haven’t actually started solids yet and probably won’t for another month, as we’re going to do Baby Led Weaning and J needs to be able to sit up first.)

I know he’s fine though, and I’m not going to change anything. My supply is great, he’s eating well, seems happy, and Marfan causes a very lean frame so a leveling off of J’s weight gain is to be expected.

Feeding issues aside, we left the office with two referrals. The first is for the sleep clinic at the hospital. Baby J has had some episodes of stopping breathing and then gasping while napping, plus he snores off and on and is a bit of a restless sleeper. Could be sleep apnea (common in Marfan), could be his reflux causing problems. We won’t know which without a sleep study. That’ll be in 2.5 weeks.

The second referral is for Early Start, for physical therapy. J still can’t push himself up with his arms or really roll over. He did do belly to back once on Tuesday, but the pediatrician said he should be consistent with rolling over now. He’s also behind with sitting up. I was going to wait a little while longer to call, but she seemed surprised I hadn’t already and said she felt it was important for him to be followed by a physical therapist, given his diagnosis.

Now I wait to hear back from Early Start, over whether they’ll accept Baby J. I’m trying not to think about the possibility of both of my kids being in the system. Obviously Mark & I will do whatever our kids need, but it would be more than ok with us if J can catch up without the extra help.

I was also fascinated by our pediatrician’s response to J’d borderline (?) physical delay compared to M’s significant speech and language delays. I had to circumvent our pediatrician to get him evaluated and assisted for what was clearly a problem, yet she readily offered extra help for his younger brother when I was only somewhat concerned. I think perhaps this speak to society-at-large’s view of disability…physical disabilities are in some ways more accepted than mental ones, especially if they are readily identifiable. It’s also another reminder that doctors tend to be trained to pick up on physical delays faster than other developmental delays (particularly speech!).

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