Playing with paper

Nothing really new here.  Niko and I just returned from an 11 day trip to LA.  I was there for work and everything went swimmingly well.  I can't complain about that.

We have been having a few in-home therapy appointments this week before the holidays.  Physical therapy to get her more limber.  Occupational therapy for her future occupation.  And speech therapy for her debating skills.

Here is a sweet moment with a piece of paper.

The stuff that Mila says...

This is completely random.

Tonight while she was sitting on the potty she suddenly said, "Obama poo-poos in the potty.  And so does Romney.  Imagine Romney in a pull-up!"  And she threw her head back in laughter.

She's so entertaining.

Rolling over!

She did it! Niko rolled over twice at her physical therapy session yesterday. On both sides! She rolled from her back to her tummy in very slow motion, but she did it like she had the ability to do it all along and was waiting for the perfect opportunity to show off.

I'm so thrilled and proud of her. I hope that this means more independent mobility for her. I'm sure she will enjoy life a lot more if she can move around as she pleases.

... a proud mama.

How old is she in I-Cell years?

I have been thinking about the irony of Niko’s condition.  It makes me think of that song by Alanis Morrisette.  Isn't it ironic?  But the irony to that song is that none of the situations mentioned in her song is ironic.

Traffic jam when you're already late.  Not ironic.  

A no smoking sign on your cigarette break.  Not ironic.

Ten thousand spoons when all you need is a knife.  Not ironic.

Meeting the man of your dreams and meeting his beautiful wife. Not ironic either.  

All of the above is simply bad luck.

I'll tell you what is ironic.  

The cruel irony with Niko’s life is that she is forever young but already old.

I-Cell kids are forever young because they don’t grow beyond the body of a 2 year old.  Their mental capacity seems to reach the ceiling of a 2 year old.  Their speech and motor movements are more like a 9 month old. 

But they are old.  With each month, their bones become more brittle.  Their joints become stiffer.  Their already limited mobility decreases.  Major organs start to fail.  As they age, a simple cold can put them in a hospital bed. 

They are like 80 year olds stuck in a 2 year old body. 

For dogs, the old rule-of-thumb is that one dog year equals seven years of a human life, more or less.  I am applying this theory to I-Cell to determine roughly how old Niko truly is. 

I-Cell children have a life expectancy of 5 – 7 years.  Of course some pass away at age one, while there are cases of I-Cell children living till ten.  With less than 20 living I-Cell children in the U.S. right now, the stats are somewhat unclear. 

I’m taking the generous number of 7 to the average American lifespan of 78.2 years.  (The U.S. ranked number 37 in the global chart of life expectancy.  Pathetic!)

So one I-Cell year equals roughly to 11.2 healthy human year.  Niko is now almost 7 months old, which means that she is actually 6.5 years old. 

Smiling at her favourite seat.

Reading with sister and papa, one of her favourite activities.

Claire's Dream

This video of Claire makes me so happy.  Claire is that 4 year old boisterous girl we met, who also has I-Cell.  In her own cute way, Claire was telling a story that her older sister decided was about her dream.  I love how animated she is here.  At the end of the video, she was signing "hug".  She's a pretty awesome girl.

I-Cell in unexpected places

Last weekend I went to visit my very good friend L.  We parked our car on Clement street.  I looked up from our parking spot and this is what I saw.

I would have never paid any attention to this sign for a cell phone shop before.  But now, a giant i-cell sign hanging above my head looks so shocking and ominous.  

Hospital fun

The hospital has become a familiar place.  Let’s see in October, we went to the Skeletal Dysplasia clinic where we saw ten specialists in one day.  And that was a great thing; otherwise we would have had ten separate appointments.  Last month we also saw her pulmonologist, her neurologist, her pediatrician, her physical therapist, and a nurse who administered the synagis shot for RSV.  We will need to get the synagis shot once a month until March because the RSV virus (which can cause bad colds for healthy children) has claimed the lives of many I-Cell children. 

So with all this time at the hospital, I start to notice the little details that most people pass over without much thought.   

I can tell I've been in the hospital too often and too long when...

When I start to recognize the faces in all the ad posters. And I've fondly given them all names, occupations, extra curricular activities and political affiliations.

When my body jerks involuntarily from the shock of hearing another language other than Tagolog.

When I start comparing the long terms benefits between Danskos, Nurse Mates and Hush Puppies footwear.

When I can tell the difference between interns and residents by their body manner.

When I step into an elevator and can guess, quite accurately, which floor and department each person will go to based on their facial expressions.

When I know where all the bathrooms are and which ones have the best changing stations. 

When I know the locations of all the hand sanitizing stations on the floors.

And how can I miss them when they are proudly accompanied by these 7 ft posters?

These posters make me quite happy. They are life size! How ridiculously superfluous? The antibacterial department had a high budget this year.  Initially I thought these two were models posing as doctors. But upon closer look, I see that the man, Ryan Knueppel, is a doctor of Infectious Diseases.  That explains his propensity for sanitized hands.  But the woman, Renuka Navaneethanathan, is a “Hand Hygiene Champion” who moonlights in Rehabilitation Services.  And you can tell she is the champion by her display of the straight finger rubbing technique.