Niko is happy again

Over the last month, Niko's tummy was getting so extremely lumpy and hard that it felt as if she were growing a new bone in there.  Or at the very least, I thought that her organs were enlarging and pushing everything out of place (an inevitable progression of the disease).  Coincidentally she also had about a month of crankiness, interrupted sleep (about every hour), and was just not acting like her usual self.

I arrived at this product of deduction - shit.  A giant lump that was a month's worth of impacted fecal matter, to be precise.  We took X-rays of her abdomen to prove this theory.  They did indeed find a whole lot of shit.  (We will follow up with an ultrasound next month just to be sure.)  Well that was a relief.  Any other finding would have been so much worse.  But I was also flushed with guilt because I did this to her.

Niko's nutritionist and doctor recommended that I switch her to Toddler's formula.  I looked at the nutritional content of both formulas.  The calories, fat, and nearly everything looked the same.  The toddler formula had more calcium, phosphorus, and a couple other rather little details.  I thought that by sticking to the same brand, this wouldn't be too tough.  Not to mention, the toddler formula costs about $10 less per can.  To ease the transition, I made a concoction of 50% infant formula and 50% toddler.  I started this about a month ago.  And the constipation started.

I'll skip over the details but now we have found the culprit.  This is all so discouraging.  I didn't try to switch the formula just to save a few bucks (though an extra $10 a can, it adds up).  I really wanted Niko to develop more maturity in her digestion and eating habits.  We've been working with a feeding therapist twice a month for almost 10 months and we've made no progress.  Not only can Niko not swallow any pureed foods, she can't handle any formula except one brand of infant formula.  Her digestion is so weak that even if she learned to swallow solid foods, I doubt she would be able to digest them.  So maybe I should just leave her at the level she is comfortable.  I just vomit a little in my mouth at the thought of Niko eating baby formula for the rest of her life.  Learning the delightful flavours of food is so very high on my list of joys for Niko to experience.  But I'll give her a break for now.

So on a bright note, after nearly two weeks of being back on infant formula and a few doses of Miralax, Niko has cleared that giant hard lump.  She is back to the usual cheerful baby.  She's smiling, cooing, playing, sleeping.  Simply carrying her and walking down the stairs result in big belly laughs from her.  So nice to have her back.  

Despite getting her RSV shot today and being extra congested, Niko has been in such a sweet and cheerful mood.

And bath time is her favourite time of the day.

19 months

My Niko is 19 months old.

She's sporting Mila's old Christmas hat here.  We are getting ready for our trip next week - 10 days in snowy Santa Fe!

Niko loves giving me the sideways stare when I take her photo.  She thinks it's her good side.

 

Glass Children

Ever since we found out about Niko's diagnosis, I've been focused on providing Niko with the best care, the most love, the best balance of protection and exposure to life.  I've been focused on creating memories, documenting moments, and trying to create meaningful keepsakes that will live with me long after Niko leaves me.

I have put a lot of my energy into what feels like a mission – a mission with the objective of magnifying and celebrating Niko's life.  But during this time, I have a counterbalancing concern. 

And that is Mila.  This concern is not only about giving both girls equal attention.  It’s way beyond that.  Any parent with multiple children, in which one is disabled, knows exactly this dilemma.  How do I protect the healthy one?  How do I inform her?  How do I prepare her?  How do I explain that Niko requires greater attention?  How do I express that "not now" does not mean "not you"?  How do I prevent sibling guilt?  How can I avoid ruining her life?    

I did a quick search for sibling guilt or survivor guilt and I found this incredible talk on TED.  This woman is a surviving sibling.  She is among a group that is sometimes called, “glass children”, children with siblings of special needs.  I’ve never heard of this term before.  This talk is fascinating.  She talks about her childhood experience as the healthy sibling, the guilt, the frustration, the expectations, the devastation.  She also talks about how one should treat the "glass children", how to impact their lives in a positive way.            

Side note, ever since I have noticed a change within me towards anger, I have become less sensitive.  I'm no longer the emotional mess that I have been for the past year and a half.  I can now have a serious adult conversation about Niko without wetting my clothes with tears.  I once read a quote somewhere, "I do not want to cry.  Because once I start, I'm afraid that I won't ever stop."  That is what happened to me, literally.  I used to be someone who just never cried, and then suddenly I could not stop crying.  It's been one continuous cry for one and a half years.  I went through my days on the very verge of tears, and anything triggered the release of the dams.

Am I going through the classic stages of grieving?  I don't know, maybe.  First stage:  Denial.  Second stage:  Sadness and Crying.  Third stage:  Anger.  I don't know what's next.  I have not read that handbook.  But what I do know is that this third stage is much better than the second.  Self control has been reintroduced, and I realize that it's been sorely missed.  I even made it through this Ted video without a single tear.

Here are just some of the many ways Mila performs as the entertaining sibling.  Niko is so lucky to have Mila.

 

Rifton Mini Pacer

Niko's physical therapist ordered a demo Rifton Mini Pacer for us to try out.  So far, Niko hardly moves at all in this thing, and so it's hardly anything to get excited over.  But I AM excited.  She looks so cute in a vertical position.  I really hope that she will get the hang of this.  I so wish for her to be able to cruise around and enjoy some mobility.  And I look forward to buying her some new accessories - shoes!  These little shoes are borrowed from her little cousin.  I can't believe this girl doesn't own one pair of shoes yet.  

Time to get angry

I'm done with being sad. It's time to get angry.

Sadness paralyzes you. It makes you sit around waiting for things to end. It zaps you of your energy. It makes you feel like a victim.

Anger motivates you. It makes you jump up and kick things. It fuels you with fire.

In the past month or so, I've gone through a series of unfortunate events that leaves me believing that I might be cursed or something. I do not need to elaborate about my misfortunes but I know I will never forget these couple months. I felt myself slipping into deeper sadness, or rather I started to realize that I was sad. But suddenly last night I felt my blood start to boil. My cheeks started to heat up. My heart beats made themselves heard - loud and clear. I started to feel more alive than I have felt in the past year and a half. I realized that I was becoming angry. And I liked it.

So what should I do as a freshman angry person? Well what do angry people do?

Angry people punch walls and listen to loud punk music. Alas I'm a wuss.  I carry around lotion just so I don't have to experience dry cracked knuckles. Introducing my knuckles to a wall... Ha! That's not going to happen. And people rocking out to loud punk music look as if they're having epileptic fits. I'm not young or cute enough to rock that look.

So what are some accessible angry activities that I can sink my virgin angry teeth into?

Angry people compulsively clean their whole house.
Angry people drink red bulls and crush the cans in one hand. Hai-yah!
Angry people seek justice.
Angry people don't take things lying down.
Angry people have passionate angry sex.
Angry people have six packs.
Angry people jog up long flights of stairs, followed by stomach crunches, while listening to the soundtrack of Rocky.
Angry people enjoy telling off those poor telemarketers who unknowingly dialed the number of an extremely angry person.
Angry people use the F-word a lot because it feels fucking good.
Angry people breathe heavily, thereby deliver more oxygen to their brains resulting in increased energy, concentration and alertness. This is an original Shinmin-theory.
Angry people know what they want.
Angry people are sad people with fires in their bellies.
Angry people are sad people who want change.

And this is just the change I need right now.

I asked Niko to give me her best angry stank face but this is all she gave me.

RIP Naya

Naya just passed away a few days ago, November 14, 2013.  She was around 5 years old, I believe.  She lived in Saudi Arabia.  She had been sick and was hospitalized for a long time.  Her father mentioned that she was recently released to go home.  So we all assumed that was good news.  However he went pretty silent for a couple weeks and now he just announced her passing.  I'm so sad to hear about the fall of another I-Cell child.  I know that this is a battle in which we will all lose in the end, but each passing is so difficult.

رحم الله روحك

Niko just started her first round of Synagis shots (for RSV) for this scary cold season.  But that does little to quell my fears.  There are so many sick kids all around us.  Each cough, each sneeze, each little hand that reaches for Niko sends chills down my spine.    

I love this sleeping face

She gets so sweaty in her sleep.  It's adorable.

18 months!

I can't believe my baby turned 18 months a couple days ago.  I'm a horrible mom because we didn't even do anything special for her 1 1/2 year birthday.  I had every intention of doing something for her, but the day slipped away from me.  With Niko, I feel that half birthday celebrations are totally justified.  Sorry I'm ordering fireworks for your second birthday.  

Happy sweet 18th month Niko!

RIP Julia

I used to hardly notice the approaching of the flu season.  Now I am terrified.  In previous years I couldn't be bothered to get the flu shot.  Now I run out to get the entire family vaccinated immediately.  I used to associate the notion of people dying from the flu to centuries past, or to the unlucky few in developing nations.

Now as the weather cools, I fear everyday, not only for Niko, but for all her I-Cell brothers and sisters.

We lost another I-Cell angel today, Julia.  I don't know if her passing was due to a particular illness or simply from the disease wearing on her frail body.  Although she had been trached for a few years, she recently was unable to process the carbon dioxide out of her lungs.  This poor girl also suffered from PTSD from the long years that she had to battle this disease.  

I'm not sure how old she was, but I think that she was around 11 years old, the oldest I-Cell child I've known.  

This is a very old photo of her shared on facebook.

Rest in peace sweet angel.

    

End of camping season

We just came back from our last camping trip for the year.  The weather is really cooling down now.  No more T-shirt camping.  I just want to look back on the lovely spots our amazing camper van has taken us. 

I think we've finally settled on a name for our camper.  It's Van Wolfie.  First of all, we now know he's a boy.  And secondly, we called our rental VW camper in Hawaii Camper Van Beethoven (I know, not very original).  So when it was time to name our new baby, Mila wanted to call him Camper Van Amadeus, for Wolfgang Amadeus Mozart.  Camper Van Amadeus was a bit long and didn't sound right, and Van Wolfie rolls off the tongue more smoothly.  I think I like it.    

Santa Cruz Mountains.  Niko was sleeping blissfully behind the mosquito net.  

Samuel Taylor in Marin.  My favourite campground.  It's gorgeous here.  

Niko made it to every trip except one when she was really sick.  She and I stayed home while Kiril and Mila fought off Turkey vultures from eating their dinner (or them).  

One of the sneaky turkey vultures

Mila loved running through all the redwoods.

Half Moon Bay 

China Camp

Cozy reading break with my girls

We got new front seats!!  They look so new and out of place right now.  But Van Wolfie will be headed to the boby shop for a new paint job this winter.   

What to eat while camping?  Beef Bourguignon! 

We got a new pop-up tent.  This one has three windows for maximum air flow.

I found some forest gnomes who live in the hollow of a redwood tree. 

I tried everything to keep her warm at nights.  Last night, I finally found the one solution that worked - a snow suit!

I love walking on fallen trees.

After camping, a bath or shower feels heavenly.  Here is Niko fresh out of the bath.  Mila can never get enough of naked Niko.  It's really sweet to see Niko finally initiating play, rather than just passively receiving attention or affection as she used to do.  She really knows how to take an active part in play now.

Happy Halloween!

Here are my two peacock girls.

Mila asked to be a peacock this year.  Being someone who sees everything as more than its simple form, I made her into a victorian peacock.  

This is the only decent photo we got before the sun went down.

Mila's baby peacock sidekick was asleep in the stroller the whole time we begged for candy.

RIP Madison

The world lost another sweet I-Cell child today.  Madison - November 16, 2007 to Oct 22, 2013.
Madison had dynamic energy.  She loved to sing and was able to reach some pretty high notes.  She had an infectious throaty laugh.  She and her family were very religious.  And Madison loved singing songs of worship.      

Yesterday Madison's airways clamped down and no air was able to flow through.  The family said their goodbyes and the doctors gave Madison morphine to help her along.  But to everyone's surprise the morphine gave her a boost of energy and Madison was hyper, joyful, and full of laughter for another 10 hours.  She told her family four times, "I see Jesus." Then she looked at everyone and told them that she'd see them later.  What beautiful final moments.

Rest in peace sweetie.

Italian Family Circus

This past weekend was sunny, warm and the perfect time to visit Zoppé, a small Italian Family Circus.  We caught their last day in the Bay Area.

Mila had never been to a circus before.  Her expressions to the tight rope walkers, trapeze acrobats and horse jumpers were priceless.

Mila with friends, Gigi and Rose, and Cavallino the baby pony.  

Niko kept staring at Mr. Zoppé, thinking, "What the…?"

Dance Party

Mila and Niko are jamming to some fun tunes.  

Mila has no idea what they are saying in this song.  She calls this the "Get Mexican Lucky" song.  

And I think that they are both stunned stupid by Supersonic.  

17 months

My cutie pie sleeping princess is 17 months old.  

 Her little curled up body kills me!

The stuff that Mila says... to me

I just have to write this stuff down before I forget.

Mila picked up a dandelion.
I said to her:  Quickly, make a wish and blow.
She held the flower up over her head and said: No, I will let the wind make the wish.  Blow wind blow!

Mila:  Mama, thanks for making me.
Me:  Oh Mila, that is the sweetest thing to say.
Mila:  Papa's just a bit of salt.
Me:  What do you mean by that?
Mila:  Papa's just a bit of salt.  You are the baker.  And I'm your little pastry.

Mila:  Mama, why do you always tell me what to do?  Are you the boss of the world?
Me:  Yes I am.
Mila:  No you're not. Obama is!
Me:  Fine.
Mila:  Do you want to end up like Romney?

And here are a few things she rattled off in a car, one line after another, as if she were a stand-up comedian specializing in machine gun one-liners.  

Imagine an ant windsurfing in a bowl of split pea soup.

You know what's funny?  Sixty million toads jumping in a trampoline!

You know what's the heaviest thing on earth?  A T-Rex weighing himself.

Here is Mila playing teacher with Niko, in Chinese.  Her interpretation of a teacher's mannerism is pretty funny.    

More Mila car-rambling

Waking

I love the way Niko goes from an angelic peaceful sleep (to which I can enjoy the rising and falling of her little stomach with each breath) to a sudden outburst of cries.

The abnormal

It's amazing how normal the abnormal can be for a 4-year old.  I had to explain the notion of "special needs" to Mila only once and she accepted that so easily. This is a testament to the open minds of young kids.  I believe I should share more with Mila while she is still young enough to receive all this heavy stuff as our "normal".  I feel that the longer I wait the more painful it will be.  Mila is such a loving older sister to Niko.  I don't want to drop the bomb on her when she's old enough to realize how incredibly unfair this is.

The other day we bumped into a neighbor while I was walking Mila to her ballet class with Niko in her stroller.  The neighbor, looking at Mila's tutu, asked, "Are you going to ballet class?"

Mila beaming with pride said, "Yes!"

"Will you teach your sister ballet when she's older?"

"No, my sister will not be able to walk.  She's special-needs."

The neighbor recovered quickly. "Well you will just have to teach her the movements of the arms."  

I'm so proud of Mila.  I didn't have to say a single word.  She handled this like a pro.  

And kids notice Niko… a lot!  I'm pretty honest with myself, I know Niko looks odd.  In my eyes, she's cuter than a newborn puppy in a bike basket, but to the unfiltered eye, I know she's crazy looking.  And as we all know, kids are brutally honest.  But here is what I find interesting.  Kids (under five) have not yet been programmed to recognize or judge people based on physical deformities.  As I said with Mila, the abnormal is normal.  I think what they do notice is the loss of symmetry and proportion.  While Niko does strike them as different or maybe strange, they do not yet know why or perceive her defect.  Niko and I drop off and pick up Mila from preschool nearly everyday.  We see lots of kids.  And this is what they all say to me, "Her eyes.  There is something wrong with her eyes."  Or "Her eyes are puffy.  Has she been rubbing them?"  They all notice her eyes.  I think that is extremely interesting.  

My tired Niko, rubbing her eyes

  

HMB Camping

Having a camper van is like having a 2nd home.  You have to buy all this shit to put into it (though I admit that is wildly fun).  I feel like my carbon footprint is looking like that of big foot's.  However I just saved a 35-year old car from meeting the junkyard so maybe I'm stacking up my carbon neutral points too.

We camped at Half Moon Bay this weekend.  It's such a short drive from our house (about 45 minutes).  It's almost as if we never left home, except for the sleeping in a freezing car on the beach.

This baby cot, right above the front seats, is twice the size of her bassinet at home.  We sleep in a car and Niko gets an upgrade on her bed.  

Niko loved watching Mila fly a kite on the beach.  

Pulling Niko into my bed for a morning snuggle.  She was freezing cold but slept better than any night at home.  Maybe that's what I've been doing wrong at home, I'm forgetting the ice packs in her bed.  

I love stripy Niko against stripy bedding.  

The stuff that… uh-huh… Mila says

Mila:  Momma, Niko is over a year old.  Don't you think it's time that we teach her how to walk?
Me:  Well, I don't think that Niko will ever walk.  She' special.
Mila (frowning):  So I'm not special?
Me:  You are very special.  Niko is special too.  She is special-needs.

Later that afternoon…
Me:  Mila, we are about to meet momma's very good friend.  She is very special!
Mila:  Ah.. special-needs?

In fact, anytime I mention the word special now, she wants me to specify if something is special or special-needs.  How do I know exactly the level of appropriate information to explain to a four year old?  I don't want her to go around asking if everyone is special-needs.  We might end up walking out of many rooms with our tails between our legs.  However to hide everything about Niko is to set Mila up for big disappointment in the near future, and perhaps severe emotional damage.  What I am certain about is that Mila should understand that Niko is different.

Handbook of Discussing Difficult Topics With Young Children, where are you?  

Eyes and Heart

It was time for Niko's annual eyes and heart checkup.  I have nothing to report and I couldn't be happier.  Everything checked out fine.

I love this photo of her echocardiogram.  She was so calm.

We saw the same Zen Master who monitored her previous echo.  Niko seemed to recognize him, or his energy, right away.  He explained to me that if a child has a good experience with him upon the first visit, he/she will always have good subsequent visits.  And vice versa, if the child was terrified during the first visit, the child will freak out at all other visits.  Even if the patient is only a few weeks old on first visit, the child will respond the same way to him for all other visits throughout the patient's life.  And he's been specializing in pediatric cardiology for over 20 years.

He also asked me to notice the shifting of Niko's eyes when I laid her down on the bed.  He said, "I wait until I see, in their eyes, that they are settled down.  You see right now she is still scanning the room, meaning that she is not ready for me to start……. There.  Now she had recognized me, and she's settled into a comfortable space.  I can begin."  He was so calming that I was ready myself to curl up on the chair and sleep.

But look at Niko in this photo.  The room was dim.  There was a soft buzz tone all around.  There was a monitor with flashing lights of red and blue.  And a tender gentle man was rubbing her chest.  She was in heaven.  I did not even mention that she got three vaccine shots in her thighs just moments before this appointment.  She went from painful screaming to bliss.  This man must have a PhD in zen mastery.  

The Junkyard Wonders

Mila loves books.  She loves books so much that somedays she demands that I read 8 - 10 books to her in one hour.  Her book collection can reach the ceiling and back a couple times, if the books were stacked (and we have high ceilings).  So now we go to the library a few times a week to check out as many books as I can carry for our 8-block walk home.

I love the library.  So many books to read and we don't have to keep any of them.  We simply return them for others to enjoy.  What a great system!  Who came up with this wonderful public service?

I mostly select books by the illustrations.  They say, "Don't judge a book by its cover."  But that is exactly what I do… for children's book anyway.  A simple story can become alive with richness when accompanied by stunning illustrations.  A flat character can become nuanced and intriguing if drawn with flare.  Because I'm so naturally drawn by aesthetics in every aspect of my life, I cannot read a picture book if the pictures are unattractive.  Perhaps it's superficial, but when a book is poorly illustrated, the writing become coarse and second-rate in my eyes. 

The other day, I just grabbed a book as we were heading out, based on its illustrations of course.  When we got home, I read the story to Mila with Niko on my lap.  This is a favourite activity for the three of us.  The book is called The Junkyard Wonders by Patricia Polacco.  And suddenly I started to choke up.  I even heard my voice shaking.  I admit that I've become extremely sensitive since having Niko.  But nearly bursting into tears from a children's book?  

I had no idea that this book is about children with special needs when I grabbed it at the library.  It's about a gang of misfits, shunned by the "normal" kids in school.  They form strong bonds and experience excitement and sadness.  Some of these kids are diseased, some have tourettes, some are dyslexics, and some are geniuses.  This book was a surprising find.   

Living

If a grandparent, or parent, or uncle, or great aunt were diagnosed with a terminal condition and were told to have about three to five years left to live, one would say that this person is dying. Family and close friends would visit more often to spend precious time together to indulge in memories, to share stories, to relive grand achievements, and to celebrate this person's life.

Perhaps on the drive home,  the visitor starts to grieve.  The brave face he put on, just moments ago, starts to fall.  He is witnessing the deterioration of life.  He is witnessing attrition, collapse, loss.  He is waiting for the light to dim.  He is watching a loved one die, losing one physical ability at a time.  He is preparing himself for closure.

My Niko has a terminal condition, but she is not dying.  This is where perspective is my salvation.  We are told that she has a scant number of years to live, but her light is not dimming.  Rather than watching someone lose function slowly, I have a small round baby with unknown potential.

On the seesaw of doom, we somehow ended up on the raised seat, lifted high above the murky water.  I have the pleasure of witnessing Niko develop and learn.  I get to watch Niko acquire new skills and functions.  I get to watch her explore and find pleasures.  I get to have hope.  Will she learn to sit up?  Will she speak?  Will she roll over?  Will she crawl?  Will she call me momma one day?  Niko is not losing but gaining.  She is not fading, but growing.  I get to have hope in a child who is not dying, but living.        

One of Niko's new pleasures — hanging her right leg out of her stroller. 

Mila's number one fan

Ridiculous in pigtails?  Maybe. But she circumvented "hideous" and went right back to "cute".

Camping

We went on our first camping trip in our new (very old) camper!

I honestly had no expectations of getting this thing out of the shop anytime this year.  But after almost two months of work at Fred's Garage, this baby came home this weekend.  The cosmetic work will begin shortly.  But that will take time to track down all the perfect parts and to pick the perfect details and colours.  (This will be more fun than designing a dream house.)

So this weekend we jumped into our kombi and headed straight into the mountains.

I was so thrilled about driving in this camper.  While this vehicle introduced me to an orchestra of sputtering, choking, screeching, rattling, ka-booming sounds that I've never heard before, I really didn't care that we were being blown all over the highway.  The breaks were not really responsive and we hardly kept up with traffic, but I felt magnificent.  Each time we passed a reflective surface like a shop window or a shiny wall of glass, I was shocked to see our beautiful reflection.  Now I know how those gorgeous girls feel when they spot their own reflections and ogle at their lovely selves at every given chance….  "Oh ooooooh! who is that beauty?  Oh it's just me looking back at myself.  Hello hot stuff!"  When I'm in my kombi, I am vain and damn proud of it.

Taking a feed break at a rest stop.  Don't we look brady bunch?

Niko loved being in our Kombi.  She slept like a champ behind the mosquito net.  

The only thing that put a damper on things for me were the nasty mosquito bites that I suffered.  The worst one was just under my left eye.  The entire left side of my face swelled up, causing temporary sensory loss. 

Moreover I happened to eat something that resulted in an abominable rash all over my body (one of the worst rashes I've ever endured)… no part of me has been spared.  I have a horrible rash e-v-e-r-y-w-h-e-r-e!  I am having wild fantasies of riding on a mechanical bucking bronco made entirely of loofah.

But all in all, a damn good weekend!