FEEDING THERAPY /  by Micaela

Tomorrow we are going to St. Mary's Hospital for Children to meet with them to discuss Lula's feeding therapy.  Lula has been practicing with her spoon (note: crazy hairstyle courtesy of dad) so we'll see what they say.


SUNDAY OUTING /  by Micaela

In our attempt to return to a somewhat normal life, this afternoon the four of us ventured out to a bar in Carroll Gardens. While it was so wonderful to see our friends, it's definitely not what having a pint in a bar was intended to be.

Any trip out of our apartment involves setting up a combination M*A*S*H unit and nursery in foreign surroundings. It means an hour of packing and prep work, and improvising IV poles out of chair backs, etc etc once we get there. Its such a production to undergo for a glass of wine and we are completely exhausted afterwards.

I'm hopeful that the more we practice the better oiled this machine will become and eventually the enjoyment will outweigh the effort. Until then I'm having a glass of wine at home and watching Hoarders.

THIS IS HOW WE ROLL /  by Micaela

This is Lula's fantastic new fully customized medical cabinet. It holds all of her various feeding and medical supplies as well as being a stand for her feeding pump. It's completely adjustable and on wheels. She has one very handy dad, doesn't she?






BLUE HAIRED LADY /  by Micaela

Here's Grandma Susan with one of her charges (circa Xmas 2010).

She is our resident nurse, bagel buyer, folder of laundry, and general shit-talker in addition to helping to feed, bathe, change, and amuse the babies.

She is here 3 days and nights a week and is no doubt the glue that holds what little sanity we have together.
 
She is certainly proving the old adage that you never stop raising your kids, even after they are grown and raising their own kids.

Thanks, Mom!

RASTAROAN /  by Micaela

I can only tolerate so much reggae before I want to throttle someone.  So whenever I am away Sam plays reggae pretty much nonstop to get his fix.

I think he's trying to inculcate Roan into a nefarious British hippie lifestyle.



DOING BETTER /  by Micaela

Lula is now off of oxygen and breathing room air.  They are going to take out her catheter, but they have called a surgeon to do it since it was put in via incision in her ankle.  She is taking all her feeds really well and PT and OT came and worked with her this morning. We are seeing the little Lula that we all know and love come back into her face.

To add to our collection of home hospital equipment, we are being sent home with an oxygen machine so that if something like this ever happens again (and let's hope it doesn't) we will be a bit better prepared.  If all goes well tonight she will be going home tomorrow.

The nurse today is a bit of a flake so I am having to double check everything she does, but otherwise everyone here has been great.
Lula with her monkey from Auntie Aggie

Gorgeous view of East River and Queensboro Bridge at dusk

Crazy rigged IV that Methodist had to put in (it went into her bone). Everything is impressively improvised in hospitals

Lula sans oxygen

DEEP BREATHS /  by Micaela

We are all trying to calm down after our ordeal with Lula, who is currently in the Intensive Care Unit at Cornell. She is still very sick and has pneumonia, but she is at one of the best children's hospitals in the country.  Right now we are not even taking things a day at a time, we are taking them an hour at a time. She has shown improvement today that will hopefully continue. She is one seriously tough little girl.

Lula's South facing view of the Roosevelt Island, the East River, and the FDR Drive

Lula with her ill-fitted oxygen mask

I'M NOT A DOCTOR BUT I PLAY ONE IN REAL LIFE /  by Micaela

I feel like I am completing medical school through correspondence course. And by "correspondence" I mean endless piles of paperwork, faxing, refaxing, phone calls, transfers, missed calls, and unreturned calls.

Lula has 7 doctors at 4 different hospitals, 3 therapists, a service coordinator, a social worker, and numerous night nurses.  She has therapy 5 days a week and usually 1 or 2 doctors appointments per week.

Her schedule rivals Obamas, but I can handle that.   It's the medical black hole that I regularly seem to fall into that feels like an abyss. I don't even know what I don't know.

Just when I think I have a grasp on things somebody says something like "we needed that paperwork last week - you had to fax the consent to the health management department etc etc. Now we may have to reschedule your appointment for June. Don't you have a case manager?"

Moments like that truly are devastating because I can't even protect my child from incompetent bureaucratic pencil pushers, let alone disease and illness. Exhausting.

A WORD ABOUT THE DOG /  by Micaela

Long before these two came along there was Gracie, who was the center of the Walker/Murray universe. My parents called her their "grandpuppy" and she was showered with walks and cuddling and attention and love. Now she is a walking hazard, something to potentially trip over while holding an infant or two, as well as a rather irritating doorbell echo (we actually got a new doorbell but that didn't outsmart her for long).

Luckily she has weathered her newfound neglect pretty well and hasn't taken it out on the anyone.  Now that Roan can crawl and has become grabby she is quick to keep at least 2 feet between him and her,  but with Lula she is the opposite.  This could be that since Lula has a weak vocal chord she is the quietest one in the family, but I really actually think Gracie feels like Lula needs a bit of backup. 

Gracie's napping spot of choice

With Grandma Cam

ASAGOHAN /  by Micaela

I believe this means "breakfast" in Japanese. Obviously Japan is on all our minds and, given recent events, I have yet again recalibrated in my mind what it means to be "lucky" or "unlucky".

This photo is of Lula's breakfast feeding therapy session, which I prepared in the way we had our breakfast at the wonderful Ryokan we stayed at in Kyoto 2 years ago, which is to say in lots of little dishes.  Lula has oatmeal, milk, pears and even a little cinnamon. The little dish is also from Kyoto.

We do twenty minutes of feeding therapy total with Lula sitting in her chair. We use a straw, a spoon, and a little cup, alternately. She is best with the spoon but the straw is growing on her.  She is still only taking about 20 mls of food by mouth (less than half an ounce) but she enjoys it and she is now happy to be fed in the chair which she wouldn't do even 2 weeks ago.

Here's to progress in tiny increments against seemingly insurmountable odds.


Lula ready for breakfast