The Flight of our Hummingbird

Meet Chris Langan

2012-01-27T14:49:00.000-08:00

Meet Christopher M. Langan, bouncer/Smartest Man in the World: Langan's off-the-chart IQ cannot be measured with conventional standardized tests; it can only be estimated with experimental high-ceiling tests, which put his IQ at between 195 and 210. He began talking at 6 months, taught himself to read before he turned 4, and he used these early-acquired reading skills to learn about

My further pondering about personhood and human rights

2012-01-23T22:14:00.000-08:00

I think I have disclosed before on the pages of this here blog, that I have some masochistic tendencies that manifest themselves in various ways, as in using an epilator that yanks unwanted hair out by the root as well as reading the comment section of disability-related articles, even though I’m fully aware what kind of bigoted comments I have to wade through. After the Amelia Rivera transplant

Non-person humans and non-human persons

2012-01-19T01:47:00.000-08:00

I've been comfortably curled up under a rock, engrossed in Izzy's transition into the school system and all the meetings, assessments, evaluations, administration and such that it involves, while pretending that the world ends at the borders of sunny Orange county and it is not full of closet-eugenists and other humanoids who think that people with disabilities are God's punishment to women ,

Finally a finished update with lots of pictures and a video

2012-01-07T11:04:00.000-08:00

There are all these abandoned, unfinished updates sitting in my blog post list, failed attempts to keep you updated about the usual craziness going on around here. We've been very busy this past month with the various meetings, evaluations, assessments, appointments, phone calls and emails that accompany Izzy's transition into the school system, not to mention that they piled upon the regular

The Price is Right

2011-12-17T10:42:00.000-08:00

Let's play "The Price is Right'. I will present a medical equipment below and you will have to identify its price. You can check how close your guess was buy scrolling down below the picture of the item. The prices indicated in the answers are offers by various online sellers and usually lower than catalog prices. If you get them all right and you are not a parent of a child with special needs or

Medical supplies

2011-12-16T14:13:00.000-08:00

Despite the fact that Izzy has three medical insurances (one private PPO and two government/state insurances), we have been paying for all her medical supplies out of pocket. It has been more fiscally beneficial to buy them on various Internet sites and pay full price than to pay the co-pays billed out by the medical supply providers. There is no restriction on the selling price of medical

Food for thought for the holiday shopping season

2011-12-15T01:42:00.000-08:00

"I want the consumers to be aware - that the workers have a hard time. We pay for this with blood and sweat. We toil and we sweat. And at the same time the companies never make a loss. I do not want you to stop buying - but you should know about our difficult situation."

The report of my death was an exaggeration

2011-12-13T16:09:00.000-08:00

I'm still alive and well, living the exciting, glamorous life of a privileged Orange county housewife who doesn't have to work but can freely indulge herself in managing seizures, mucus, tube-feeding and therapies all day long, or have long, frivolous conversations on the phone with delightful insurance agents. I wish I could tell you that the reason why I haven't blogged for almost a month was

Freeze

2011-11-16T19:47:00.000-08:00

During my language teacher years, in another life, I used this drama technique in class called "freeze" in order to work on my students' listening comprehension as well as to cater to the language learning styles of my kinesthetic learners. I read a text out loud that I had carefully prepared in advance, making sure that it was appropriate for my student's comprehension level, yet it was

Same old

2011-11-12T00:29:00.000-08:00

It looks like 11/11/11 has passed too without an apocalypse and the world hasn't ended despite of the doomsday predictions and the neat little palindromic date on the calendar. Now if you have ever experienced an apocalypse on any scale, you know that worlds usually fall apart unexpectedly and unannounced. Do you know what else hasn't ended? The flipping seizures. We took Izzy to the

Monday blues

2011-11-07T22:46:00.000-08:00

I've been a lousy blogger of late, writing fewer posts, slacking on my replies to comments, not commenting on my favorite blogs - delinquencies for which I feel moderately remorseful. It's not that I've been so very busy, or at least not busier than usual, I just simply didn't feel like writing a gloomy post about the vengeful return of Izzy's nonstop seizures, especially not when everybody is

A post in which I talk about Phil's birthday, zombies, and I might mention pedophiles

2011-11-02T17:30:00.000-07:00

It was Phil's birthday this weekend and we celebrated it like most people celebrate birthdays: with some tasty food, a luscious cake and a fake-blood-drenched zombie costume. The zombie costume took part in our birthday festivity as it was being prepared for the Halloween fun at Phil's studio on the following day, which had the theme 'rednecks and zombies'. Therefore, between our celebratory

Grouchy

2011-10-24T15:09:00.000-07:00

http://seanlinnane.blogspot.com/2009/10/penguins.html Izzy caught a snot bug last week and it seemed like it was going to pass swiftly, but then it turned out to be a pretend express virus and the Bean actually got snottier and altogether declined in the snot department throughout the weekend, and then I got sick with some despicable cold virus, the vicious kind that attacks you out of the

I Heart Budapest

2011-10-16T02:57:00.000-07:00

Before we left Hungary, Phil and I got to spend a whole day in Budapest, just like in the good old days: roaming around on foot and periodically hopping on a bus, tram or subway. We thought it would be best not to expose the Bean to the plethora of delinquent city-germs that dwell on Budapest's public transit so we left Beanie home to hang with Grandma Pam, a program she preferred anyway. Going

On the way home

2011-10-14T16:57:00.000-07:00

Apart from an emergency landing in Denver caused by a belligerent drunk passenger and the consequent appearance of the FBI on our plane, we had an uneventful, smooth flight back to California. Apparently, Izzy thinks that the best time to fall asleep is when an aggressive drunk guy yells out obscenities and threats loudly or when the feds carry out a quick little investigation, under any other

My must eat before we leave list

2011-10-06T07:16:00.000-07:00

In love

2011-10-04T13:19:00.000-07:00

Trip to the vineyard

2011-10-03T14:03:00.000-07:00

Today Izzy visited grandpa's quaint little vineyard and garden, where she smelled and touched some aromatic herbs, tasted some sweet tomatoes and even sweeter grapes, listened to the grape juice fermenting, bubbling, turning into wine in the barrels down in the cellar, watched the kittens play and the spider weave his web, and it was all good.

Out

2011-10-02T13:06:00.000-07:00

Izzy was discharged from the hospital after three days, Friday afternoon, after she had been pumped up with IV fluids and her lab results had swung back to normal. After she woke up from her 48-hour nap and her big blue eyes popped open, she immediately started smiling, kicking and vocalizing and she hasn't stopped since. She already has her grandparents wrapped around her little baby carrot

This is how we do vacation

2011-09-28T18:06:00.001-07:00

I imagined Izzy's first encounter with my parents in numerous ways, but none of the scenarios involved the worst cyclical vomiting episode of her vomit-filled life that would land her in intensive care three days later. Izzy got an ear, throat and tonsil infection that triggered the three-day long awful vomit-fest from hell and, coupled with her high fever, caused a nasty case of dehydration

List

2011-09-19T18:31:00.000-07:00

... to check off before embarking on a journey to the other side of the world: 1. buy a collapsable stroller to take instead of the wheelchair (because the wheelchair costs $10,000 and can't be replaced for another 4.5 years if it gets damaged) 2. figure out how to get to the airport if you don't want to take a car seat with you to Europe (that has different car seat regulations anyway) and

Stroll on the knoll

2011-09-17T00:17:00.000-07:00

After three weeks of severe sensory deprivation at the ICU, our family unit desperately needed to take a long leisurely stroll in the park right above our soft sandy beach, where the grass is always emerald green and the air always smells like salt. We walked down the knoll, towards the infinite blueness of the ocean-sky and immersed ourselves in the splendor of the beach's transcendent beauty,

Home, sweet home

2011-09-15T22:45:00.000-07:00

I'm sorry for being a delinquent blogger, I feel positively contrite about disappearing into the nebulous cyber space. In my defense, I've been trying to write an update since we broke out of the hospital, but I got slammed with the preparation for our impending Hungary trip and the resumption of our normal life. Did I just say normal life? Ha! So last Friday afternoon we were finally

D-Day

2011-09-09T12:49:00.001-07:00

Yesterday morning the nurses and therapists showed up in big yellow gowns and masks in our room and a tri-lingual sign was stuck on our door that announced that the Bean was in isolation. I was informed that the infectologist thought it necessary to quarantine us due to the fact that the Bean coughs and the pseudomonas bacteria can be transferred through her sputum to other medically compromised

Glitch

2011-09-07T00:02:00.000-07:00

I was watching the Bean sleep sweetly and peacefully when I noticed on the monitor that her oxygen saturation started dipping deeper and deeper, all the way into the 40s and upper 30s, at which point her porcelain white skin started to adopt a bluish tint around the mouth, cyanosis is the proper medical term, I believe, that describes this bluish discoloration of the skin resulting from

Still at the hospital

2011-09-06T15:44:00.001-07:00

Not that it hasn't been immensely fun to hang out at the pediatric intensive care unit, but after two weeks of hospital-living, I'm starting to get antsy and ready to be released back into the wild. Neither the Bean or I thrive in captivity so I'm fairly certain that she shares my sentiment. She has been subject to enough torture to develop a distinct dislike for medical professionals, it even

Extubated

2011-09-04T17:27:00.001-07:00

Izzy was finally extubated in the morning and she is breathing on her own, even though she is still receiving oxygen for respiratory support. She could have been extubated yesterday, but she decided otherwise. Beanie thought she would rather just sleep through the day and not breath over the ventilator, except for a brief period of time when she got mad at an unsolicited diaper change and showed

Post-op

2011-09-03T00:47:00.000-07:00

When Izzy was rolled up from the operation room, her eyes were still taped shut and she was still wearing the OR's signature blue shower cap. When her seasoned PICU nurse removed the heavy blankets from her, she quickly registered that the Bean was burning up with fever. However, the young bubbly OR nurse quickly dismissed her and claimed that the Bean was hot from the thick blankets. I

It's happening

2011-09-02T11:47:00.001-07:00

Last night the neurosurgeon came to talk to us and informed us that while the operation room is reserved for Izzy's surgery, it might not take place after all, due to some Insurance issue. "We'll see" was the consensus and we prepared for possibly being very disappointed in the morning. To our surprise, the glitch was solved and Izzy was taken away to have the VNS implanted about 20 minutes ago.

A slice of miracle

2011-09-01T18:48:00.001-07:00

Apparently yesterday's tentative plan to extubate Izzy this morning proved to be way too optimistic. Yesterday, the secretion in her lungs seemed to be thinning out and decreasing in volume, so it wasn't unreasonable to assume that the tube could come out today. However, you should never underestimate the vicious, persistent, tricksy ways of Izzy's mucus: a boatload of whitish/yellowish thick

My deep thoughts for today

2011-08-31T09:32:00.000-07:00

After a week-worth of interaction with a wide variety of individuals, I conclude that most people mean well and have good intentions, and when they say or do something silly it's either due to lack of experience, information or thinking. But of course, once in a while you do run into some special people who are here to make the world more colorful.

Tic-toc

2011-08-30T17:58:00.001-07:00

Waiting

2011-08-29T18:02:00.001-07:00

First of all, I would like you to know how much I appreciate all the support and encouragement that I have been receiving from you. Your thoughtful comments, e-mails, Facebook messages, texts, phone-calls, prayers, thoughts, cyber-hugs, and positive energy are like a big, soft, fuzzy blanket, comforting and keeping me warm. Izzy must have felt all the cyber love coming to her direction because

Not so good

2011-08-28T18:05:00.001-07:00

Hospital, seizuresIzzy started seizing again this morning so they doubled the dose of versed to put her in deeper sedation. Tonight the neurologist is going to look at the Bean's EEG and decide if he needs to yank up the dose to deepen the sedation, or even take it all the way to a coma. On a positive note, Izzy's pneumonia is clearing up, the gook in her lungs is not as thick and yellow, and

Another update

2011-08-27T15:46:00.001-07:00

Thank you so much for all the sweet encouraging comments, your support and concern for the Bean means a lot to me and I really appreciate and love each of you. Izzy is still receiving a high dose of Versed that keeps her heavily sedated and she is still intubated and still sporting the Joey-the-mobster look due to the white hairnet that keeps the electrodes on her head. I wish I could put a

Update

2011-08-26T20:56:00.001-07:00

Yesterday:Today:Izzy was intubated this morning because her SpO2 level was dropping into the 60s, a result of being under heavy sedation. We are waiting to find out whether or not the drug presently being administered to her has stopped the status epilepticus. If not, they will induce a coma.

Telegraphic status update

2011-08-25T17:24:00.000-07:00

I'm typing this post on my phone while standing beside Izzy's hospital bed at the pediatric intensive care unit so it will be a telegraphic style status update. On Tuesday we had Izzy admitted to the hospital because the frequency of her seizures went from awful to horrendous and we suspected that she was in nonconvulsive status epilepticus. The 24-hour EEG confirmed our suspicion and showed that

A minimalist mood update

2011-08-16T01:00:00.000-07:00

1. This is how I feel about seizures in general: 2. This is how I feel about seizures recurring every 15-60 seconds: 3. This is how I feel while waiting for the neurologist to return my phone calls about recurring seizures: 4. This is how I feel about our upcoming visit to Hungary after 4 long years:

Long post about the freedom of speech for the very patient

2011-08-12T13:08:00.000-07:00

My father has always been a great story-teller who could turn an insipid incident into an amusing anecdote, so I grew up on vividly delivered fables and fairy tales, as well as true stories from his youth. Some of his true stories were a bit grim, especially by Disney standards, but no worse than one of the more violent bits in the Brother Grimm anthology. One of these grim stories was about a

Vomit, Vimpat, VNS, and some ridiculously long sentences

2011-08-08T18:36:00.000-07:00

Today started so serenely with Izzy waking me up by softly stroking my face, a gentle caress is the first step in her usual action plan to get me out of bed and guide me towards her feeding pump. If I don't respond to her tender touches, she switches to slightly stronger strokes, then to patting, then to smacking, and if all fails, she resorts to forceful kicks, strategically aimed at my head.

Nightmare

2011-08-07T14:03:00.000-07:00

The Poem of the Soul Nightmare by Anne Francois Louis Janmethttp://www.oceansbridge.com/oil-paintings/product/83731/thepoemofthesoulnightmare I woke up this morning from a dreadful dream with a heavy feeling deep down in my chest but as I glanced over at the quietly breathing sleeping Bean looking like a peaceful porcelain doll and the morning fog slowly settled in my head I realized that the

In case you were wondering

2011-08-02T12:15:00.001-07:00

In case you were wondering, I hereby would like to assure you that we are still alive and apart from the godforsaken seizures and the shortest cyclical vomiting episode in the history of Izzy, the Bean is doing fine. We've been just too busy hanging out and having fun with Aunt Jenn, with whom the Bean is seriously smitten. While I don't curl up on her lap like a smitten kitten or play peekaboo

My further ponderation on conscience typed with one finger on my phone while holding a very restless Izzy

2011-07-22T19:04:00.000-07:00

A while back there was a social media campaign against the word "retard". Brave participants of the campaign monitored live feed on Facebook and Twitter, and whenever someone used the r-word, they contacted them and politely communicated their disapproval. While I applaud everybody who was gutsy enough to participate and thus stand up against this disparaging slur, I was not convinced of the

Conscience

2011-07-19T12:15:00.000-07:00

"About one in twenty-five individuals are sociopathic, meaning, essentially that they do not have a conscience. It is not that this group fails to grasp the difference between good and bad; it is that the distinction fails to limit their behavior. The intellectual difference between right and wrong does not bring on the emotional sirens and flashing blue lights, or the fear of God, that it does

For Jenn

2011-07-16T23:52:00.000-07:00

Since you requested visual documentation of the hair crime committed in our bathroom, I hereby present the following photos. Exhibit#1&2: This is what I looked like after coercing Phil into cutting my hair: Exhibit#3,4&5: My hair after professional intervention: Exhibit#6: A picture of the Bean to increase the post's cuteness quotient: There you have it.

Snippets, or let's see if I can write an update while Izzy's pump is running

2011-07-15T16:56:00.000-07:00

1. Izzy finally got over the last mucus invasion. The increased Pulmicort and Xopenex nebulizer treatments combined with diligent suctioning got rid of her Darth Vaderesque breathing and large-alcoholic-smoker cough, both of which attract double takes when coming from a stroller. 2. We payed a visit (literally) to Izzy's gastroenterologist who happily concluded that despite the Bean's

Operation Haircut

2011-07-07T17:21:00.000-07:00

"Look he has Izzy-hair" Phil said cheerfully as he pointed out the car window at the Rastafarian hairstyle of a homeless passer-by. "Oh yeah" I agreed even though technically the homeless person's long dreadlocks only matched Izzy's hairstyle post-cyclical vomiting. Her last vomiting marathon was doubled up with a snot bug induced mucus fest, in which mommy actively partook as well, so by

A very short update on how we are doing

2011-06-30T20:50:00.000-07:00

The good news is that Izzy finally stopped throwing up after two days and we all managed to keep our sanity. The bad news is that she is still sick, exhausted, feverish, and has an inordinate amount of mucus. I suspect that I caught the same bug that she's got because I'm also sick, exhausted, feverish and have a generous amount of mucus of my own. I guess nobody tells the Universe to suck it

Lavender Festival on Saturday, Vomit Fest on Monday

2011-06-27T23:38:00.000-07:00

Saturday we went to the Lavender Festival in Ojai, a quaint little town with a weirdly spelled name, embraced by rugged mountains and rugged city dwellers craving some small town charm and change of scenery. My sweet friend Elizabeth asked me if we would join her and the kids in Lavender heaven and we were up for the adventure. (Everything is an adventure that involves a 3-hour trip with a

Awekenings

2011-06-23T13:12:00.000-07:00

Have you ever read Oliver Sacks' memoir the Awakenings? Sacks was a British neurologist who treated the survivors of the 1917-28 encephalitis lethargica epidemic in the 1960s. His memoir tells the life stories of the victims and chronicles the doctor's efforts to treat these catatonic patients with L-Dopa, a then new drug that was used to treat Parkinson disease. If you haven't read the

I might be...

2011-06-19T22:18:00.000-07:00

I might be horrible with directions, I might be clumsy with gadgets, buttons and machines, I might be inept when it comes to math and numbers, and I might not have any aptitude for music, but when I watch you play guitar for the Bean, and I see the joy that overcomes her, when I see the sheer delight on her face when you come home, and the way her eyes light up every time she looks at you, I am

Retard

2011-06-10T14:48:00.000-07:00

Back in December I posted this e-mail that I had written to Etsy in response to some greeting cards on their site that made fun of Down Syndrome, rape, breast cancer, and some other hilarious issues. In the comment section of my slightly indignant post, an anonymous commenter ever so kindly educated me about the offensive nature of today's pop comedy and pointed out that the people who find

The death of a boy

2011-06-07T04:21:00.000-07:00

When the photos of the abused Abu Ghraib prisoners were leaked in 2004, the shocking images created an international uproar. The level of public outrage sore high when accounts of physical, psychological and sexual abuse of detainees emerged along with some quite unflattering photos of Lynndie England who thus entered pop culture as the smoking symbol of sadism. The revolting images were deeply

The sound of music

2011-06-04T14:43:00.000-07:00

Dear Orange County Drivers:

2011-06-03T03:00:00.000-07:00

I would like to inform you that contrary to the apparently widespread rumor among OC motorists, there hasn't been any change in the California Vehicle Code regarding pedestrian rights and duties. Hence, the driver of a motor vehicle must yield the right-of-way to a pedestrian who is crossing the roadway within any marked or unmarked crosswalk at an intersection. In other words, you need to slow

Shades

2011-05-31T11:44:00.000-07:00

We take sunglasses and color-coordination very seriously in the family. The yellow The brown The blue The pink The white

Sunday Confession

2011-05-29T16:03:00.000-07:00

I have been withholding important information from you. I haven't told you that Izzy has been on a new antiepileptic medication that turned out to be a miracle drug as she has gone from 300+ seizures a day to a mere 10-20. I haven't told you, and I'm only whispering it now ever so softly, because I didn't want to jinx it. And I'm not even superstitious. Shh! Of course, if you are one of the

In case you haven't seen this on TV

2011-05-24T23:24:00.000-07:00

Weekend pictures

2011-05-23T11:48:00.000-07:00

I wish I was a hippopotamus

2011-05-22T02:50:00.000-07:00

This is for Beate who asked how I feel about the wheelchair now

2011-05-19T12:13:00.000-07:00

"Let's take the wheelchair out for a spin" I suggested to Phil when he came home early from work on Friday. It was still light outside and the Vietnam Wall (or the Vietnam Veterans Memorial Wall replica, to be precise) was on display in the neighboring park. I thought it would be an appropriate occasion for our first walk with the wheelchair: if a sensitive stranger curiously asked what was

Encounters

2011-05-15T00:05:00.000-07:00

He plopped himself down clumsily on the chair next to me and while I watched his efforts to control his unruly limbs and organize his movements, I knew I was witnessing the triumph of long years of hard work. The all-heart receptionist gave him a picture book to look at while waiting for his physical therapist and it proved to be a good pick as Franklin the Turtle seemed to perk his interest.

Just for fun

2011-05-13T15:22:00.000-07:00

Izzy's new ride

2011-05-11T17:24:00.000-07:00

Izzy's got a new ride And this is how she feels about it:

Happy Mother's Day

2011-05-08T01:58:00.000-07:00

Mother to Son Well, son, I'll tell you: Life for me ain't been no crystal stair. It's had tacks in it, And splinters, And boards torn up, And places with no carpet on the floor— Bare. But all the time I'se been a-climbin' on, And reachin' landin's, And turnin' corners, And sometimes goin' in the dark Where there ain't been no light. So, boy, don't you turn back. Don't you set

Nobody expects the Spanish Inquisition

2011-05-06T18:46:00.000-07:00

I woke up this morning to the Bean smiling at me. It wouldn't be such an extraordinary event given her jovial nature, except that she had spent the previous 50 hours vomiting her heart out. The vomit-fest started on an otherwise beautiful Tuesday morning with the emesis of a freakish amount of mucus and it ended Thursday morning with the ejection of some exceptionally disturbing-looking bile. By

iVomit

2011-05-04T08:13:00.000-07:00

I wish someone would have been interested in implementing my idea of iVomit, an app that would track cyclical vomiting episodes. If I had iVomit on my phone, it would have sent me a push alert and I would have been prepared for a vomit fest straight from hell. I would have had all my blankets and towels and tools ready to accommodate the Bean's nonstop vomiting all day yesterday, last night and

Yom HaShoah

2011-05-02T23:19:00.000-07:00

Örkény István: In Memoriam Dr. K.H.G (original Hungarian; Egyperces Novellák) - Hölderlin ist ihnen unbekannt?* - kérdezte dr. K.H.G., miközben a lódögnek a gödröt ásta. - Ki volt az? - kérdezte a német őr. - Aki a Hyperion-t írta - magyarázta dr. K.H.G. Nagyon szeretett magyarázni. - A német romantika legnagyobb alakja. És például Heine? - Kik ezek? - kérdezte az őr. -

Proof that we are still alive

2011-05-02T00:54:00.000-07:00

The last couple weeks I got to spend time with people in their three-dimensional form outside the virtual world, which was more exciting than Kate Middleton's wedding gown or the television antenna that Princess Beatrice wore on her head at the royal wedding. What was even more thrilling is the fact that said people weren't medical professionals or therapists who got paid for the time they had

I had enough

2011-04-16T13:46:00.000-07:00

Izzy's frequent vomiting episodes don't only put a strain on my mental health, they also present a logistical and financial challenge. Since our apartment doesn't have a washer and a dryer, nor does it have washer/dryer hook-ups, I have to drag the vomit-soaked stinky piles of clothes to the little laundry facility across our building. The laundry room is adequately equipped with eight new

Carly Fleichmann

2011-04-15T09:42:00.001-07:00

http://carlysvoice.com/

Really

2011-04-14T12:38:00.000-07:00

As it turns out, I don't really do much beyond what an average mom of an average toddler does, since average toddlers don't do much for themselves. (What a needy bunch.) Granted, Izzy eats via g-tube and I need to get her pump ready five times a day, but the prep work only takes a couple minutes and once I hook her up, the pump does the work. Really. While the pump is quietly chugging away, I

Oh happy day

2011-04-12T08:29:00.000-07:00

"If you could have one dream fulfilled, what would it be?" I read this question in someone's status update on Facebook the other day. "I want to hear my daughter talk" was the first thought that popped into my head but I didn't dare to post my party-pooper reply as it is a real conversation-stopper to bring up your child's disability. Not that social conventions ever stop me from informing

The things you can do when you are mucus-free

2011-04-11T10:54:00.000-07:00

Turn on the light

2011-04-08T10:37:00.000-07:00

I was going to write an optimistic update about the improved mucus conditions in our home but I aborted it after having received some gentle butt-kicking from a friend whom I love enough to get away with it. When aforementioned friend called me on the phone to make sure I wasn't curled up in a corner with my arms wrapped around myself and a maniac look in my eyes, I reassured her that I hadn't

This is how I'm doing, in a nutshell

2011-03-28T11:33:00.000-07:00

This is how I feel about Izzy's daily mucus-fests: This is how I feel about Izzy's morning and late night vomit-routine: This is how I feel about my ensuing sleep deprivation: This is how I feel about the hundreds of seizures Izzy is having every day: This is the short version.

Post-Mucus Blues

2011-03-23T19:49:00.000-07:00

It makes me tired just to say this but we've spent the last three weeks in mucus hell, and no, I don't use the term lightly as I believe that the nonstop gagging-vomiting-coughing-seizing quadripartite is only one step up from wailing and gnashing of teeth. By any means it is at least as bad as the first couple circles in Dante's Inferno and most definitely a suitable punishment for minor

I keep thinking about

2011-03-15T17:33:00.000-07:00

... these haunting, heart-wrenching images of the cataclysmic disaster that ravaged Japan and it feels strange to go about my everyday activities. Despite the abundance of vivid images and detailed reports, I find it impossible to conceive the magnitude of devastation, loss, and trauma that the Japanese people are experiencing. My heart aches for Japan and I feel keenly aware of my own

Reality Show

2011-03-11T01:30:00.000-08:00

Once I watched a whole season of The Real Housewives of Orange County, all at one sitting. It was during a particularly hellish cyclical vomiting attack that confined me to the suctioning machine so it’s not like I wasted any time or brain cells on it. My cyclical vomiting buddies, The Real Housewives of Orange County In order to avoid a messy psychological breakdown and prevent my mind

Lessons du jour

2011-03-03T00:20:00.000-08:00

Lesson#1: Just because your insurance company approves your daughter's gastrostomy feeding tube and assures your medical equipment provider that they will cover the Mic-Key button that they are about to order, it doesn't necessarily mean that you won't end up paying a couple hundred dollars for it. The insurance company only pays the "approved amount" for a medical equipment, which must be

For all ye faithful who still visit this poor neglected blog

2011-03-01T19:03:00.000-08:00

When it's not the cursed constant seizures then it's the monstrous mucus spells When it's not the monstrous mucus spells then it's the atrocious cyclical vomiting attacks When it's not the atrocious cyclical vomiting attacks then it's the horrendous constipation When it's not the horrendous constipation then it's the darn insomnia When it's not the darn insomnia then it's just plain old

“There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.” Elie Wiesel

2011-02-19T02:48:00.000-08:00

When the Bean was born, it quickly became apparent that she had some neurological issues. She did not announce her arrival with a newborn battle cry and such discrete entrance into the world is always a sinister sign. The pediatricians in the NICU explained that the Bean’s stiff muscles, scissoring legs and “dysmorphic features” indicated a chromosomal abnormality. The

Birthday fun

2011-02-11T02:26:00.000-08:00

We were going to celebrate the Bean's birthday by taking her to the Long Beach aquarium to see some large colorful creatures but she woke up hot and cranky with a fever and a cough so we thought our planned birthday fun would be sabotaged by snot and drowned in dreadful vomiting. We routinely pulled out the towels, the burp cloths the blankets, and all the protective layers and usual weaponry

two years ago

2011-02-05T03:26:00.000-08:00

I didn’t get to hold you upon your arrival I’m still sad about that I wanted to say hello, apologize for the early eviction and tell you how beloved you were but I didn’t get a chance you were hurriedly taken away amid nervous whispers I still remember the frozen feelings of fear seeping into my heart, reaching my bones, slowly settling in my stomach I didn’t know an empty

Whale Watching

2011-01-26T19:56:00.000-08:00

Have you ever seen the movie Groundhog Day? It’s a 1993 American comedy in which the main character, an egocentric weatherman portrayed by Bill Murray, relives the same day over and over again. That’s how I’ve been feeling lately, as if I got stuck in a time-loop, going through the same motions, having the same conversations, wearing the same clothes, making the same stupid jokes, and even

You know you have a disabled child when ...

2011-01-16T16:11:00.000-08:00

1. You understand every single word while watching House or E.R. 2. Hospital personnel know you by name.3. Your child has never been invited to a birthday party.4. Strangers make inane comments concerning your child.5. You have some kind of therapy every day.6. You have thought about physically assaulting a medical professional before.7. You know what PICU, DME, IEP, IHSS stand for.8. You have

Suspicious

2011-01-15T23:48:00.000-08:00

http://www.merryswankster.com/2008/05/20/highly-suspicious-highly-suspicious/ I don’t think I’ve told you that a couple weeks ago Izzy and I nearly made it into the OC Register. “Stroller-pushing mom struck by driver in crosswalk”, the headlines would have said and a short article would have explained that the incident happened on the way to my daughter’s therapy as I was crossing the road on

Wheelchair

2011-01-13T18:34:00.000-08:00

When we first brought our 1-month old Bean home from the NICU, she was fully bottle-fed. Unfortunately, nursing wasn’t an option due to Izzy’s low weight, weak suck and utter lack of interest in breasts (except maybe as headrests). I kept trying to convince her that she was missing out on the real deal, but when she actually cried at one of my attempts, I gave up and stuck to pumping. Izzy’

Random Reminiscing

2011-01-10T01:52:00.000-08:00

It was over three years ago that we stuffed our life into five suitcases, waved goodbye to our friends at the Budapest airport and rode into the sunset. It wasn't only me who was leaving home: since Phil has spent a big chunk of his life overseas and his parents and brother still live there, coming to the States wasn’t exactly homecoming for him either. Fortunately, his

A short post while Izzy's pump is going

2011-01-07T01:46:00.000-08:00

It's been a long day without a break: Izzy decided that napping was for the birds, despite her midday therapy/workout session, and she is still awake. She is playing swingy-swing in her chair while giving me mischievous looks and smiling out loud. Yes, it is adorable, and there is no resisting those smiles, but it's past midnight for crying out loud. I'm feeding her some fruit smoothie with her

A long post in which I don't discuss mucus but talk about Izzy and growth attenuation

2011-01-05T02:00:00.000-08:00

“She is in the 90th percentile!” – the nurse exclaimed excitedly as she has recorded Izzy’s height on the chart. My tiny little Bean who hardly made it onto the chart when she was born has grown into a String Bean. “Oh that’s great.” – I blithely told the nurse with an affirmative head nod. Then after she left and it was just the Bean and I in the small examining room, I silently shook my

Rambling Beard

2011-01-02T01:34:00.000-08:00

I received the super awesome Rambling Beard Award from Kim at Ramblings of the Bearded One: I'm fairly certain that it's one of the most coveted awards of the blogoverse, as it is not only cool looking, but has absolutely no strings attached. So ne ne ne ne ne ne. I don't have to jump through hoops, I don't have to pass it on to 25 different bloggers, and I don't even have to stop writing

Happy New Year

2011-01-01T02:08:00.000-08:00

It's almost midnight here on the west coast and as 2010 slowly fades away I feel a faint urge to look back and reflect on the past year, come up with something profound to say and make some resolutions for the new year. However, I spent last night awake, again, holding a little person who was puking up mucus, and it didn't leave me in a trumpet-blowing, silly-hat-wearing, stranger-hugging mood.

Music therapy

2010-12-29T23:37:00.000-08:00

Dear Etsy

2010-12-28T17:44:00.000-08:00

Dear Etsy, I appreciate you taking the time to reply to my message, even if I felt like it was mostly to placate me. I noticed that the offensive greeting card congratulating people on their child with Down Syndrome is still up on Etsy's website, along with the cards that celebrate women being raped, or getting breast cancer. Also, I couldn't help but notice that the seller broadened his

It's a wonderful life

2010-12-26T02:41:00.000-08:00

Apparently we are playing germ-pong with some mutating rhinovirus at our house. Phil and I joined Izzy’s mucus marathon, just in time to have a snot-filled Christmas. But we are almost over it, and sadly I’m losing my sexy smoker voice. I sounded like the offspring of Janis Joplin and Joe Cocker, had they ever mated. I think my immune system just went on strike. For years

Uninvited Guests

2010-12-22T01:03:00.000-08:00

(Guest post by Phil) A few months back (I try to do this every weekend) I told erika “Don’t worry about Izzy, I got her, go ahead and go do something for yourself”. She suited up, turned up the Black Eyed Peas on her iPod and headed out to the gym. We agreed before she left the Bean needed bathing. I thought, this should be fun to hang with Izzy for an hour or so. I try to bath her since it’

No comment

2010-12-20T21:17:00.000-08:00

If you find the below greeting card as offensive and unacceptable as I do, then please let Etsy know how you feel and ask them kindly to remove this item. You can contact them at community@etsy.com or at press@etsy.com. http://www.etsy.com/listing/60053498/greeting-card-congrats-your-kid-has-down Update: I removed the picture of the card, because I couldn't stand looking at it anymore. Also

Adaptation

2010-12-20T17:14:00.000-08:00

It’s been pouring for days here in Southern California and the natives are bewildered by this rude disruption of their perfect, mild weather. They are only used to pleasant atmospheric conditions so they are completely baffled by this runny substance falling out of their usually sunny skies. This “extreme weather” is the focus of the evening news and it would probably still get the most

Decisions

2010-12-15T23:55:00.000-08:00

Every morning when I wake up to those dreadful coughing sounds that foreshadow another day from mucus-hell, I have to make a decision: my mind has to come to the resolution that I can do this, even if my exhausted body tells me that I can’t. I have to tell myself that I'm able to go on and I can deal with the infinite flow of mucus and the incessant gagging and vomiting,