New York turned out to be an adventure. I packed up the kids and went to visit a friend from college---it was super nice to have the luxury of spending time with her and I got a little bit more than just your average scenic tour.
We rode on trains and subways for much of the day. Did you know it is hot underground? I'd always assumed that underground meant cool, like a cave. Joe even had beads of sweat on his little nose. We went into the city with six kids and a ducky pacifier and left with six kids. Not bad.
A quick run to Babies-R-Us the next day helped us find Ducky again.
My friend taught Rae an important life skill, eating lollipops.
Rae found and licked all the dum-dums in her car later.
The neighborhood pool has a "beach entrance", which means that it has a sloping gradient. Best. Invention. Ever. Joe sat in my lap in the shallow part of the water and Rae splashed around a few feet in front of me.
Rae was nervous at first,
but then he warmed right up.
Everyone got dressed up in aprons to help clean the kitchen.
The water gun makes the outfit.
This picture of Joe was taken just hours before....
we ended up here.
What happened? Well, Joe was fine, and then he wasn't.
We went outside to play on the swing set. Joe played happily in his infant seat, watching everyone. I picked him; he started fussing. His eyes were watery and then I noticed that Joe couldn't see.
I told my friend we needed to go to the ER now. She helped me package up Joe and her husband stayed with the kids. We left in minutes.
As we're driving down the road, she asks,
"Why are we going to the ER?"
"Joe's condition can be genetic," I explain while crying, "if it is genetic, it is most likely Stickler's syndrome. He tested negative for Stickler's, but the possibility is still there and the geneticist told me to watch for signs of Stickler's. Stickler's shows up as a cartilage issue, retinal detachment is common. She told me to make sure that Joe was tracking objects everyday. If he stops, go the ER and get his retina reattached."
We drove to a little community hospital, with a little ER that had never seen a baby with Pierre Robin sequence before. The nursed had to google it.
The doctor, a kind and gentle man, told us that he was not equipped to handle this situation, but following my instinct, he found the (personal, nonetheless) cell phone number of the pediatric retina specialist in the nation. He called him and arranged for us to meet Dr. Chan as soon as we could drive down into the city.
We drove down. Four eye doctors (we happened to have four of the top eye doctors in the nation) examined Joe and came to this conclusion: it was not his retina. In fact, his retina does not even have the malformations common in a baby with Pierre Robin's. Completely healthy.
By this point (about five hours after the incident), Joe was interacting a little better. He still couldn't see to grab his ducky, but he was responding better to people and less frightened. And he had slept a lot more than normal. Each time he woke up from a nap, he seemed better. By the time I took the picture above (at our second ER of the day, around 8pm), Joe could see his ducky and move it in his hands, and he was mostly back to normal.
Dr. Chan initially recommended that we go home and see a pediatric eye doctor. We repeated the story and as he listened to it, he changed his mind and sent us to another ER across the road to have a neurological evaluation done.
Which lead us first to the trauma room (above) and then to this room (the next five pictures).
Hospitals are fascinating places ---if you can ignore the reason that you are in them.
We found such fascinating oddities as the hideaway toilet.
P.S. Not a subtle flush. (The sign said "flush," so I had to try it...)
Joe was getting sleepy by this point and I was too...
the pirate-costumed nurse asked if she could get anything for us,
I asked for jello.
"You're jazzing for jello?!"
"Yes."
She came back with two, which I happily enjoyed.
When we finally got to our room in the pediatric wing and started bedding down for the night, I got the couch and my friend got the floor. I couldn't figure out why the nurses were letting my friend stay with me, but I wasn't about to argue it, either.
Turns out, they thought we were gay.
Welcome to New York.
Joe gets breast milk through his g-tube. Not my breast milk, that ship sailed months ago, but through Eats on Feets, other moms in the area donate their milk to Joe. Throughout our stay, I kept getting meals fed to me. I finally learned that they assumed I was still pumping...
Oops.
Joe had a EEG put on his head. The video camera in the room watched him while he played and slept. If the incident was a seizure, they hoped to catch more seizure like activity within the next 24 hours. They EEG came back completely normal.
(Joe loved this stacking toy. It lit up and sang.)
The bandage on his head is covering up all the probes to monitor his brain activity. It's a big sock that ran down his back and hooked into the TV set on the wall.
So, we went home. They chalked up the incident to "reflux" and now we have more specialists to go see.
Wahoo, adventure.
