Bonnet

I take Niko for a walk everyday in the Baby Bjorn. It's getting sunnier these days and the sun gets in her eyes.  So I made her a bonnet today.

She looks so stinking cute!

She's still very stuffed up and not sleeping well but at least she doesn't seem to be suffering anymore.  

Update on Wynnie

Wynnie has been in the ICU for one month now.  He started smiling about a couple weeks ago.  And on Friday, the 5th, he was extubated successfully.  He is now connected to a bi-pap.  I think I-Cell kids make the cutest Darth Vaders.

His mother wrote, "At the small cute age of 4, Wynnie has given us glimpse of his life's purpose. He has brought us together and has endeared himself to everyone at Childrens (Hospital) that has come into contact with him. He has reminded us how precious and unpredictable life can be. He has shown us how scary the reality of his I-cell disease inevitability is."

I do see the bigger picture now.  These kids are not destined to a disadvantaged life only to teach us a lesson.  Let's not make this about us.  These kids have been placed on a fast bullet train, racing through life at an excerlerated pace.  They are little but they are such a force.  Their impact on those around them grows exponentially.  They are here for a brief time and they make HUGE waves, each wave gathering more strength until the tsunami hits.  We are not as strong as them.  All we can do is try our best to soak up the intensity of these children and offer them as much love as we possibly can before we get left behind.  I feel a deep strange feeling for all special needs kids.  I can't quite find the right word to describe it.  Right now "admiration" is the best I can come up with.  

Sick Niko

My little Niko is sick.

She caught a cold from Mila.  However this simple cold is really kicking her ass. She has been feverish for over 4 days.  She’s coughing a lot and completely lost her appetite.  She's already lost weight. But the worst part is the congestion.  She’s SO stuffed up.  Her tiny head is filled with mucus and phlegm, making big flapping and gurgling sounds all day and night.  The nights are the worst.  She keeps waking up screaming and panicking because she can’t breathe.  I’m sure she feels that she’s drowning.  As a result I have not really slept in 3 days. 

This morning I noticed that she clawed her left ear to a bloody mess. So I took her to see her doctor. It turns out that she has an ear infection.  We started her on antibiotics immediately.

I really can’t stand to see Niko suffer.  I reject it with every cell in my body.  In fact each time she screams out in pain, I feel the urge to vomit.  It’s a guttural reaction.  If I can’t stomach Niko catching a simple cold, I worry that I will not have the strength to handle more serious issues. 

Despite feeling miserable, she took a moment to become curious about a toy.  Today her speech therapist brought a buzzer switch that causes a pillow to vibrate.  Niko loves cause and effect toys. 

I love how she keeps looking at the therapist with this proud look on her face as if to say, "Do you see what I'm doing?" 

And here is video from last week of Niko with her occupational therapist.  She is massaging Niko’s cheeks to help her develop her cheek muscles.  We are trying to work on her feeding.  Niko is still rejecting solid foods.  Her therapist thinks it’s due to her low muscle tone and her gag reflex being in the front part of her mouth.  We have to work on helping her move the gag relex further back so that she will accept food in her mouth.

Sister Time

When Mila and Niko fall asleep in the car they always do this:

They hold hands everytime they sleep and remain holding hands until they wake.  On longer drives their hands stay glued together for more than an hour.  I can't think of anything that can make me happier than this sight.

Girl with a Stroller

Last weekend we went to the DeYoung Museum to see Girl with a Pear Earring and other works from Dutch artists.  The museum has a no-stroller policy.  I suppose it’s to protect the ankles of unsuspecting gazers in tight spaces.  They were trying to protect people from potential offenders like me as I arrived armed with an umbrella stroller. 

When I approached the entrance they informed me about their policy. They directed to me to the coat check to stow my stroller.  I didn’t want to carry Niko the entire time in the museum so I asked if it’s absolutely necessary to check my stroller.  The coat check woman suggested that I talk to the security guard to obtain an approval on my stroller.  I walked to the security guard and asked her if it would be all right to keep my stroller since it wasn’t very large and I was quite proud of my maneuvering skills. 

She looked my at stroller and asked, “Is your child disabled?” 

I froze.  I think this might have been the first time someone asked me this question point blank.  I mean we get looks all the time but, really, what baby doesn’t get stares (good or bad). 

“Yes,” I managed.

“Ok, let me check for you.  We can maybe make exceptions for the disabled.”  The security guard then called into her dispatch radio, “I need a stroller approval for a disabled child.”  I heard it echo across every radio in the entire museum.  I know it was in my head but that’s the way it played out for me.  She then repeated over the radio, “I need a stroller approval for a disabled child.” 

The radio replied in a crackling voice, “Go ahead.  It’s fine.”

I got the green light and wheeled Niko towards the ticket collector.  I hid my stinging face as I handed my ticket.  I don’t like the idea of playing the special needs card.  And I’m ashamed to admit that I quietly cried through the whole Rembrandt collection.  Why am I still so damn sensitive?  By the time I made it to Vermeer, I collected myself.  And this luminous face took my breath away.  It’s as if she was looking straight at me with a little bit of hurt and understanding in her eyes.  The rest of the day was sunny and beautiful.  

RIP Nikoly

Another I-Cell child passed away today.  She was 6 years old and lived in Sao Paulo.  She spent her life being an active little girl - tube-free and curious.  The photographs that I saw of her were oozing with personality… climbing around on her couch, scooting on a tricycle, playing with animals…  

Rest in peace dear Nikoly.  

RSV is an asshole.

I was just starting to feel relieved at the end of this RSV season.  Niko got her last RSV shot of the year last week.  I love the kind and gentle nurse who administers the shots but I really don’t want to see her again until next year.  Upon leaving the office she did mention that they usually see the rush of RSV patients at the very end of the season.

RSV can cause a bad cold for healthy kids but is extremely dangerous for I-Cell kids.

A couple weeks ago, two I-Cell kids, Dori and Wynnie (three year old twins), were sick with coughing, fever and congestion.  After a week of this, their oxygen levels dropped to the low 50s and did not pick up.  So they were rushed to the ER.  Wynnie arrived gray in colour and his lips were blue.  They were both given oxygen but poor little Wynnie needed more than just the O2 mask.  His body was getting weaker and weaker.  So the doctors intubated him.  Intubation is one of the biggest fears among the I-Cell families.  It’s highly risky for I-Cell kids and can often cause more harm than good due to their very narrow air passageways. 

It turned out that both kids had RSV.  Dori slowly improved although his heart was enlarged substantially from the virus.  Wynnie remained in critical condition.  Aside from having RSV, he had pneumonia, anemia, pulmonary edema (fluid in his lungs), excessive thick congestion, constipation, and bacterial infection in his lungs.  The following day, his lungs collapsed.  The doctors paralyzed him for 24 hours to give his body a rest and to allow the machines to fully breathe for him. 

This morning an X-Ray of his chest showed that he is doing a little better and he may let be able breathe with the vent soon. 

The reason why I’m including such painful details is because these I-Cell kids go through so much without losing their fighting spirit.  They remind those of us who are lucky enough to be healthy that we ought to be grateful.  

Perhaps I've again become unreasonably affected by the critical condition of another I-Cell child.  My heart is pounding, my hands are shaking.  But they have taught me that life is fleeting.  Everyone says, "They have so much to teach you."  I used to be resentful of that patronizing statement.  I couldn't simply sum up Niko's terrible life sentence as a lesson to be learned.  However as much it pains me to admit, I am slowly accepting this.  These tiny souls in these tiny compressed bodies are teaching me things.  I look at them with such respect.  "Wisdom comes alone through suffering" says Aeschylus, founder of Greek tragedy.  If that is true then our little I-Cell babies are volumes wiser than us and undoubtably teachers to those around them.   

Dori keeps asking for Wynnie at home, calling out “Ninee”.  Please get well soon Wynnie.