Ben went to OBX and all he got was this lousy cold

So while last week was a lot of fun with all kids- there is one things kids do better than anyone else: spread germs. By the end of the week every little boy in the house, including Benjamin, were snot monsters. Boogers flowing freely like… well… gross viscous rivers. Ever see Ghostbusters 2? Like that.

For those keeping score this is Benjamin’s first cold. To make it this long it has taken gallons of purell (not to mention a few months of living in a plexiglas box).

So far it hasn’t been so bad – he’s pretty stuffy and a little bit cranky, but no fever and only a little coughing. The doctor didn’t even want to see him. This is quite a change of pace from when he used to get put on 3 antibiotics and have a full blood work up if someone said “cold” near him back when he was in the hospital.

That said, we hope the cold goes away soon. Being sick is no fun (and he’s been sleeping  poorly through all this).

As promised other updates:

Ben’s spasms have really been improved by the vigabatrin. Only a few days after he started taking it the spasms are virtually gone. The only lingering weirdness is at night. We have caught him a few times with spasm-like movements in his sleep. Nothing like he used to have, but it is still not great. Anyhow – we’re hoping that goes away or maybe following his next EEG they adjust the dosing and make him 100% spasm-free.

As for eating – can you believe the boy who would only eat if you were sitting in his glider, with the lights off, the sound machine on and if he were 85-90% asleep, had his best feeding week ever while we were in OBX? Incredible! He even finished full bottles in rest stops! All this eating had him gain a half a pound so – making him now over 15 and a half pounds! Where does that put him on the chart? Well – not quite on it yet. Maybe if he keeps eating we can get him up to 1%.

And lastly – he is completely sitting up on his own now. You lay him down on the ground, turn round, and there he is sitting up! How did he do that?

Benjamin Sitting


4 thoughts on “Ben went to OBX and all he got was this lousy cold

  1. That’s a big milestone, good for Benjamin! Eating solids is sure to help. We used to battle the bottle too, but once it’s gone, it’s gone. Glad the spasms are becoming fewer too. As for the cold, seems like they come and go and you do get used to the snot.

  2. On one of Alex’s many hospital visits (back in the day, 25 years ago), a resident pointed out to us that Alex was only in the 5th percentile for weight. This was a concern because he was born at a very average birth weight. The resident was very concerned at my reaction – great celebration – Alex had been “below” the chart weight for months and had finally made it onto the chart! It’s all a matter of perception I guess.
    You go Ben! Someday you’ll get on the chart!

  3. Ben looks WONDERFUL! Sorry he has a cold and hopefully it’ll leave as quick as it came! Ben is showing everyone that he is going to do very well, sitting up on his own is really GREAT news! I know you and Amy must have felt so proud seeing your li’ man doing it on his own……pretty soon I am sure he will be catching up and then he will be having ya chase after him! 😀

  4. Hi- I don’t have your email but I wanted to let you know that Benjamin won one of the books on the blogiversary giveaway on Please send me an email with your address so I can mail you your book, “The Caterpillar.”


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