A LITTLE GOES A LONG WAY

The strangeness of my day-to-day life is masked as normal through unending repetition until I have a moment like this: I was on my way out the door to a yoga class, the first in six months or so, when the doctor I had paged earlier in the day called back. Lula spat up some brown mystery gunk overnight and it showed up in her residuals (basically her stomach contents back up through her g-tube into a large syringe- not for the squeamish) so I called the GI for her thoughts. She wanted to see Lula before Thanksgiving so she thought it best that I take her to the ER in Queens that day. I said ok, hung up, and went to yoga.

This is not what most people do, is it? A doctor says your child needs to go to the ER and you go to yoga first? It's not that I was ignoring any urgency-the doctor didn't want to see her until the afternoon- it's the fact that I was able to detach enough from the situation to go to yoga.  One thing I've never been good at is compartmentalizing my life, but when everything is an emergency it's awkward finding ways to fit the rest of your life amid the crises. I find myself vacillating between and abundance of panic and an eerie indifference towards the same recurring events.  That day was a day for indifference, or not so much indifference, but distance.

Yesterday we were again in the ER. This time Bellevue, this time for labored breathing. Friday night we had to put Lula on oxygen because she was wheezing and pulling her breath in an out as though she were breathing through a straw, but I fell asleep fine and slept hard. I have moved beyond being kept up with worry and into sleeping deeply to escape it. I woke up feeling jarred knowing we were not going to have the Saturday we had hoped for, so I had coffee and cereal, read about a baby who was rescued from a fire on Thanksgiving in the paper and then called the pulmonologist.

The Bellevue ER was great, and I was the polar opposite of my last time at Bellevue. I let the events wash over me and made little attempt to control anything.  It was an extremely quiet day and the staff was fantastic and patient and thoughtful.  I mostly sat holding Lu and then my friend Sharda came by for a visit - it is a true friend indeed who gives up a lovely Saturday afternoon to sit in the windowless Peds ER holding a sick baby.

They kept her overnight, and best of all they allowed us to have our night nurse come and stay with her.  This was a huge advance for us because the night shift in the hospital is hell if you need to get any sleep at all. Our night nurse Beverly is tireless, attentive, a bit OCD (in a good way) and knows Lula better than we do during the night.  She came to relieve m at 10:30 and immediately started rearranging things.  She made Lula a nest from blankets and sheets and got her settled.  I never thought I would be able to leave my baby in the hospital but I am coming to terms with the fact that raising Lula really is going to take a village, and that I am going to have to be OK with some self preservation at the expense of being with Lula all the time.

Sam is with her today and she is doing really well. Sleeping and peaceful.  Hopefully she will be home tomorrow.

TASH TIME

HAPPY THANKSGIVING!

It seems unbelievable that a year ago today Roan tried his very first solid food - sweet potatoes, no less.  You can see Sam giving Lula a bottle in the background.  This year she's having sweet potatoes too.

Happy Thanksgiving!

Roan and Lula's first Thanksgiving

SINCEREST FORM OF FLATTERY

Roan is deeply in the throes of the imitation phase of toddlerhood.  He is rapidly absorbing and then repeating everything that we all do.  It's a bit like having a small, spastic mirror around and it's a bit intimidating.  For one thing, Roan's obsession with sweeping has expanded into a full blown Joan Crawford style cleaning frenzy.  At every opportunity he is wiping down the baseboards or scrubbing the top of his highchair.  In the bathtub I gave him a washcloth with soap and instead of washing himself he began polishing the tiles. 

Clearly he has picked this up from us adults, and it does feel like we are all cleaning, washing, or folding something eternally, but if this were true then why does our house look like a yard sale most of the time?

ROID RAGE

Talk about adding insult to injury: among the many side effects that the ACTH has had on Lula (fatigue, elevated blood pressure, irritability, being stabbed with a needle every day) Lula's face has suffered the full wrath of the steroids.  She's puffed up so much her cheeks look like two water balloons, and there's a constellation of acne between her brows. 

Pre ACTH

Cheeky McPuffypants

We have started titering her down off the ACTH so she will be completely free of it by December 2.  The puffiness should recede along with the other side effects.  Then we wait and see if all this misery was worth it.

TURN OFF THE DARK

It was a little surreal around here last week.  We had a commercial for Garnier filming upstairs and it took over the whole block. The streets were cleared of cars and overtaken with tents, lights, cables and very busy people. Our neighbors were ready to mutiny.  Our poor landlords were blindsided by the scale of it all. 

Monday morning they started at 4am.  At 6am I marched up in my robe and slippers and told them to stop talking or they would wake up my kids.  I was SO tempted to dump Roan on them when he woke up at 6:30. While it was grey and raining all day outside, inside it was sunny California all day. It kind of messed with our heads.

Photo Courtesy Sam

Sam's mom was staying on the top floor in our landlords spare room and had to weave her way through the mayhem every day.  She was a good sport about it, willing to put up with smarmy production assistants so she could get her hands on her grandkids.

Monday through Wednesday we had my mother AND Sam's mother staying with us (I will pause here for full effect).  For some reason when we get them together they sing a lot. This time it was Teddy Bear's picnic.  They also conspired to buy Roan a scooter and even managed to take the kids to the diner.

We all had a lovely time.  Joss got to indulge the kids, Sam got to catch up with his mom and I got to take some time to myself.  Everyone wins!!  Joss is so enamored with the babies.  Here she is with Sam and the kids and I think her face says it all (either that or she's really enjoying "No Bed without Ted").

SWINGING IN THE SUN

Me and Roan