31 October 2011

HALLOWEEN!!

If you haven't figured it out yet I absolutely love Halloween.  I think it should be a national holiday devoted to imagination and creativity.  I think there should be a law that you have to make your own costume and that it preferably be creepy.

Fort Greene is perfect for me because I am not alone in my over-the-top adoration of this holiest of days.  There were block parties everywhere and hordes of people milling about in costume. One house creates an entire stage production every year complete with sets and elaborate costumes. Lula was surprisingly cooperative in her Bride of Frankenstein hair helmet and Roan made his own costume at lunch.  Halloween is awesome.


Roan making his costume

Beet killer

Bride of Frankenstein

Me and Lula

As usual our attempt at a group photo was a failure

Roan and Sam

Clinton Ave Halloween Extravaganza

Our neighbor Claire as cotton candy!

30 October 2011

BOO-TON BUDDY

Check out Lula's spooky Halloween button buddy!


BEETS NO MORE

We've been stuck inside due to two sick kids and a freakish and annoying October snowstorm, so I decided to make a very small, very simple horror movie.

I am sure my film and animation friends will be horrified by my primitive editing skills more than anything else, but I cobbled this together after a 10 minute tutorial on Final Cut Pro from my babysitter.  The music and general psychosis are taken from Sleep No More, an insane theatrical experience based loosely on Macbeth. Roan's inspiration was beets for dinner.

Make sure your sound is turned up and you have it set to full screen for maximum creepiness.




29 October 2011

COUSINS

Last weekend was a boisterous, slightly chaotic, totally wonderful weekend of cousins. My cousin Jamie, her hubby Ken, and their 3 kids came up from Philly and stayed in my neighbors vacant apartment, sacrificing any comfort and amenities to be as close to us as possible. Between us we had 5 kids 5 and under. The kids, Saire 5, Ronan (yes, very confusing) 3, and Declan 10 months are absurdly gorgeous and goofy and sweet. Roan trailed Ronan and Saire in endless circles of giddiness at the playground. Declan was inexplicably terrified of Gracie. Jamie and Ken indulged in real NYC bagels.

Saire was totally entranced with Lula. We explained to Saire that she had to keep her hands very clean so she religiously used hand sanitizer.  She asked endless questions about Lu.  We explained the G-tube, why she couldn't hold up her head why she didn't make any noise. Lula mostly slept through everything, a side effect of her new meds.  It was so amazing because even though Lula couldn't run with the kids or participate in anything they were doing, Saire made sure Lula felt noticed and special.  She tried to include her in any way she could. She always wanted to help us change her or give her tummy time or therapy.  She even let us try out the blood pressure cuff on her when it wouldn't work on Lula. It was so encouraging to me that Saire didn't just see her as a baby who couldn't do anything she was supposed to be doing, but as someone whose specialness was meant to be explored. 

Sunday we took all the kids to Extreme Kids where Lula had an OT session and the kids spun like a giant collective whirling dervish on the therapy swing.  The weekend culminated with a big group bath (minus Lu) that was more splashing than washing.

We literally did not stop moving for two days. Sunday night I was paralytic.  I felt as though I had run a marathon.  It was SUCH a blast and well worth the exhaustion.


Declan and Mom

Saire on the slide

Living room chaos

Ronan

Saire

Pick-me-up

Lost shoe

Ronan swinging

New bath toy

COUSINS!!!

Sphygmominometer

End of the day collapse

Declan and Felix at Extreme Kids

Dizzy

Jamie and Declan

Sleeping beauty

27 October 2011

HEAD CASE

I came home from work today to a forehead knock to beat all forehead knocks. Roan has had his fair share but this one takes the cake:

Adamantly refused to stand still for a photo

Most often this seems to happen while under the care of my mother. She swears this is merely a coincidence but I'm not so sure.  Remember this post?

DONK

Lula's PT actually suggested we may want to get him a soft helmet!  I'm thinking I should just duct tape a tennis ball to his forehead every day.

26 October 2011

UNDER PRESSURE

If you've never been discharged from a hospital, imagine a scene where checkout at the grocery store the day before Thanksgiving was managed by TSA airport security.  Throw in a couple of bright but clueless first year residents who graduated from medical school a week ago and you've got yourself the shit show that was our release from the hospital on Friday.

Friday morning a bespectabled hipster doctor cheerily went over everything that needed to be done before we could leave.  He asked that we be patient and said we may not be able to leave until 2 or 3.  They needed to take care of a blood pressure monitor for Lula and list all meds and instructions in the discharge papers and make sure our night nurses were up to date.

2:00 and then 3:00 came and went. At 4:15 I put on my coat, put Lu in her car seat and stood outside of the nurses station with all my bags, looking like an itinerant mom stuck in an airport.  I really did start to feel trapped.  The morning doctor was long gone and the new resident looked confused and a bit panicked.  She handed me a bunch of prescriptions for all of the things they were supposed to be arranging for us all day. I realized that, in fact, nothing had been done.

Now it was 5:00pm on a Friday. Where the hell was I supposed to get a blood pressure monitor? "Oh, just go to any pharmacy".  Um, I have 16 month old twins and you are sending me out to try to find a cab that will take me to Brooklyn on a Friday at 5:00pm and then find a pharmacy that's open and has everything we need in stock?  Have you ever tried to take a cab to Brooklyn at 5pm on a Friday??  Have you ever tried to accomplish anything at 5:00pm with 2 small children to feed, bathe, dress, and put to bed by 7:30??? Have you ever even changed a diaper???? I kind of lost it.  I just sat down on the floor in the hallway and started crying.

Turns out that while most pharmacies stock adult blood pressure monitors, none carry infant ones, something apparently, that they do not teach you in medical school.  To shorten a long and very frustrating story, we now have a blood pressure monitor (a cheapie one) and no one can get a reading on Lula, including two nurses and a pediatrician. It appears that only a hospital grade sphygmomanometer (aha!) can find Lula's tiny little pulse, especially now that her new meds are making her retain water and she is chunking up like a little sumo wrestler.

At one point a resident at Cornell actually suggested that I take my child to the Emergency Room to have her blood pressure checked.  Her insurance would not cover a visiting nurse or a digital sphygmomanometer but it would cover an ER visit that would have cost 10 times as much, taken hours, and exposed Lula to untold hospital borne germs and diseases.  I finally spoke to a nurse in the Neuro clinic who said we were fine to wait until Thursday to get her blood pressure checked when she is going to Bellevue for other appointments. THANK YOU.

The ONLY upside to this palava is that I have been saying sphygmomanometer every chance I get.

YOU TUBE TUBIES

My friend Sonya, a girl of many talents, happens to be a very skilled editor.  She is also an awesome girl and she shot and edited 2 videos on how to use our feeding pump with breast milk (it's easy to waste a lot of milk which is fine with formula but not fine when you are pumping).  The videos are posted on a website called Feeding Tube Awareness that is an incredible source of information and support run by the parent of a tube fed child.  I really really hope they are useful to some parents out there.  Nobody in the medical community or at the feeding pump company had any ideas so we had to improvise.



http://www.feedingtubeawareness.com/HowTos.html

Thanks so much Sonya!!


25 October 2011

POP QUIZ!

Word of the day:


Leave your guess in the comments!
(no peeking on the internet)

21 October 2011

EYE OF THE NEEDLE

To be filed under Things I Thought I Could Never do Until I had Kids: Today I gave Lula an injection.

I used to be terrified of needles. Something about their inherent precision and my lack of hand-eye coordination seems incompatible.  But Lula has started on a new seizure medication that requires us to give her a shot in the thigh twice a day for a month.  When they told us I thought, bring it on.  I practiced on a banana and then went for it.  Much like skydiving you don't want to have too much time to think about what you're doing. It went fine.  The nurse told me I was a rock star, which given their propensity for IV drug use is probably accurate but I don't think that's what she meant.

Lula has been at Cornell since Monday.  The first night they gave her an EEG and found that her seizure activity had increased despite the meds she was given for the past 2 weeks.  The most irritating thing was that even after they were done with the EEG they insisted on leaving all the electrodes on her head for an extra six hours because her insurance wouldn't cover an EEG that was fewer than 18 hours.  I was pissed and the doctor had the nerve to say "I think you're getting upset about something that isn't really bothering her".  Oh really? Please tell me if you thinks this looks like fun:

They call it the Rainbow Ponytail. She's supposed to have a gauze schmata over that but she kept worming her way out of it.

We started the new meds and were told that she will definitely suffer from side effects.  We were told to expect anything from constant irritability to temporary diabetes. It will suppress her immune system making her vulnerable to every cold and flu any of us comes in contact with. We will now have to  monitor her sugar levels and blood pressure at home as well as giving her the injections.

Sam, my mom and I have all taken turns staying with her in the hospital.  Hospital stays are so hard because unlike at home Lula doesn't have her own nurse.  We have had wonderful RNs here but they can't just sit with her if she's having a hard night because they have other patients.  Last night on my shift she was fussy, junky and feverish pretty much all night. Finally I went to sleep for about 4 hours because there was nothing I could do to settle her.  In the hospital I always alternate between feeling guilty that I am sleeping at all to feeling so exhausted and irritated from not getting enough sleep.

I awoke to the nurse in full Hazmat regalia of a gown, gloves, and a mask that looks like a little windshield.  No good.  They were worried that she caught a virus in the hospital and were testing her for RSV and flu. We went for a chest x-ray.  We are now awaiting results.  I am still optimistic that we will be able to go  home today - there isn't much they would do in the hospital that's different from what we do at home, but I am irked that she is going home sicker than when she came in.  The only place germier than daycare is a hospital so as long as it's safe I want to get her out of here as soon as possible.

UPDATE: Lula has neither RSV nor pneumonia nor the flu.  Probably just a garden variety cold. Headin out soon.  Yippeee!

MRS. SMITH

Our very sweet neighbor, Mrs. Smith, passed away last night.  She lived on our block for at least 40 years, maybe more.  She was always outside sweeping, in front of her house, our house, any house nearby that needed a little upkeep.  It was her mission in life that no stray leaf sully our fine Brooklyn block.  She is even immortalized sweeping on Google Earth. Roan, of course, has been engaging in a similar sweeping obsession of late.

Here's to kindred spirits.  RIP Mrs. Smith.

video

19 October 2011

FIRESTARTER

When I was a little girl I was often told I looked like Drew Barrymore, especially in Firestarter.  Firestarter was based on a book about a little girl who is subjected to medical experiments and gains special powers.

This week Lula was subjected to another EEG, which involved sticking electrodes all over her head for two days.  When all the glue was finally washed out here she was:

Photo Courtesy Sam

I can't wait to see what special powers Lula has.

MALPITA

Lula is back at Cornell for follow up tests on her seizures. She brought her hospital companion once again, who now has a name.

Malpita is a hybrid. "Monkey" in Polish is "Malpa" which is in honor of Aggie, who gave it to her.  My friend Lisa suggested Monita, which means little monkey in Spanish, so I cobbled the two together.

Lula is at Cornell probably until Friday. Sam, my mom, and I are all taking turns staying with her but Malpita will be there the whole time.



18 October 2011

OUCH

This is what happens when I leave the boys unsupervised

video

ROAD RAGE

We have had an impressive run of out of town adventures, but this weekend schooled us in the ways of suburban traffic. 

Saturday night we attended a wedding, which was enchanting (congrats Lisa and Lior!) but civilized (home before 1am) and I had ambitiously planned for us to go pumpkin picking with our friends in upstate NY on Sunday.

The best part of the day was seeing our friends Tim, Elizabeth, and Charlie, and Elizabeth's mom, sister, and nephew visiting from Australia.  The worst part, and the most part, was getting there and back. What google maps promised to be an hour and 45 minute sprint north-east turned into 3 hours of stop-and-go traffic in dull suburban exurbs full of IHOPs and random carpet warehouses.

We arrived at the farm in the early afternoon a bit flustered. Lula puked all over me and herself the moment we got there but after a quick change Elizabeth hunted down a wheelbarrow and we set off for the pumpkin patch.  We had been told to bring gloves and boots and shears and we were prepared.  Humph.  The “patch” was ridiculously picked over and nothing was actually attached to the vine.

Are you kidding me with this??

Most of the pumpkins were either already rotting or grossly deformed.  I saw a 6 year old glare at her dad and bark “this sucks!”  I happen to like pumpkins with character -lopsided, nubby, discolored- but it was still a challenge to find any that were adoptable. Except Roan, he fell in love:

A boy and his pumpkin

Tim initially didn’t want any pumpkins at all and then wound up getting the biggest one:

A man and his pumpkin

It was an absolutely glorious fall day, though, and the whole trip was possibly worth it for the opportunity to stick the boys in the wheelbarrow.




Charlie, Roan, and the harvest

The drive home was even longer, almost 4 hours to go about 65 miles.  The boys were SO good in the car, they chatted to each other, looked out the window and then nodded off. Lula fussed almost the whole time and eventually I took her out of her car seat and held her until she fell fast asleep.  We all got home absolutely shattered, not at all refreshed by the country air.  Next year it's bodega pumpkins or we rent a helicopter.


A sorry selection of pumpkins

A cute selection of boy

A lovely array of girls


12 October 2011

BEST IN SHOW

Lula has made barrettes all the rage around here and Gracie just couldn't resist.

Photo Courtesy Katharine

POP QUIZ!

My friend Katharine (since freshman year of High School no less) came over for dinner.  She hadn't seen Roan for a while and she wanted to catch up so she asked him a few questions:

video

The ice cream truck answer is him actually singing the song that the truck plays as it ambles down the street.  He's never even had the ice cream but whenever he hears that tune he runs to the window like a puppy. 

I think it may be possible that on this very day, at this very moment Roan has hit his peak of absolute cuteness, never to be surpassed before or since.

11 October 2011

BEYOND THERAPY


Neighborhood friend and total mom inspiration Eliza Factor is opening an incredible place called Extreme Kids.  It's a space for kids with special needs and their families to have fun and be kids.  I have mentioned Eliza before because she has been a beacon for me to follow towards finding peace with Lula's condition.  I've sung her praises before.  Extreme Kids has new digs and we went to check them out on Sunday.  It's a fantastic space complete with a ball pit and an incredible therapy swing. While we were there her son Felix graciously let us crash his private session with a very renown OT named Huck Ho, the director of a therapy center in Manhattan called The Smile Center.

Huck is a world of advice and information.  I actually have no photos to accompany this blog entry because I was furiously transcribing everything he said into my phone.  It was a little overwhelming - he rattled off exercises and techniques, suggested additional tests and assessments and therapists. He told me that Sam and I should start looking at schools for Lula for when she turns 3! Oy. Lula's OT Loreto, who is an incredible therapist as well, joined us to get pointers from Huck.  It was on her own time, on a Sunday, with no pay.  They discussed techniques, additional therapies, adaptive equipment, everything.

The thing that's so amazing about therapists is that there is never a question of whether or not your child is worth the effort.  There is always room for improvement for everyone, no matter what their issues.  There are no DNRs in therapy. Some days the only thing that keeps me going is when a therapist says "Lula did awesome with her therapy today".  Of course they don't mean "Lula suddenly caught up and is walking", but when she works her hypotonic little tail off the therapists take notice. Waleed, Lulas PT, told Sam last week that we should really buy Lula shoes so we can get her ready to walk and my heart soared at the thought. She can't hold her head up still, but he sees potential where others see nothing but defecits.

We are about to get a new feeding therapist after much wrangling and (as usual) me being a thorn in the side of EI bureaucrats.  I hope she is good - the previous FT was great but Lula is still eating almost nothing by mouth.  Feeding is the trickiest of all and has been the most fraught for us, but she will be getting FT 4 times a week in addition to her PT 5 times a week and OT 3 times a week.  I don't know how we will ever find time to leave the house, but I am not complaining.  The more therapy she gets the more chances Lula has to prove the doctors wrong.

video

Lula and Lisa (Bye Lisa we'll miss you!)



Lula and Loreto
Waleed employs an assistant










09 October 2011

DIRT


Directly on either side of Roan two fantastic playgrounds complete with jungle gyms, slides, and swings designed specifically to both delight and occupy him.  Instead he prefers the excavated hole of a former tree stump. Perhaps a country boy at heart?

LIGHT

At the handball courts across the street

TUB TIME

Photo Courtesy Sam

06 October 2011

INSANE CLOWN POSSE

Today while waiting at the geneticists office two guys dressed as clowns came spelunking into the waiting room.  Lula and I were the only patients in the room but you would have thought they were playing to a full audience.

They were slightly hipster clowns, with pipe-cleaner mustaches attached to their red noses and pockets full of noisy beans, but they were hilarious.  Lula herself was in an outfit that Sam described as "Tundra gnome foraging for yak dung to make some Chai".  The clowns were clearly inspired and started to yodel and dance in giddy circles. 

Boho Chic

Bozo Chic

The nurse said, "I don't know who enjoys them more, the kids or the adults", but I am willing to bet they are really there for the grown-ups.  There is nothing better in a place so devoid of uncompromised joy than a dude wearing clown shoes.

Clowns always make me think of the famous "Chuckles the Clown" episode of the Mary Tyler Moore show, where Mary gets a helpless case of the giggles at Chuckle's funeral (he was trampled to death by an elephant while dressed as a peanut).   As we have been on the subject of mantras of late, Chuckles words to live by seem all the more appropriate:

"A little song. A little dance. A little seltzer down your pants".