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

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OBX: A week in photos

Benjamin went on his first trip last week! For Spring Break we try to get to the Outer Banks in North Carolina every year with some of our friends. This year we had seven kids with us! This is in addition to the 12 adults and 1 dog. I know – a house with seven little boys sounds like a terrible idea, but it was a lot of fun.

We’ll do an update soon on seizures (improved but not completely gone), feeding (he ate like a champ on our trip!) and other stuff – but for now here’s some photos of Ben enjoying the trip:

nom nom

In addition to gaining a taste for purees (today he happily ate pears!),  Benjamin is also trying some of the vast array of baby snacks available.