Birthday boys

Today is the birthday of two super cute I-Cell boys.

Mikey turns 7 today!  He lives in Florida.  He (and his sister, who also had I-Cell and passed just before her 5th birthday) are two of the most capable I-Cell kids I've seen.  I know that all these kids have their own very unique capabilities and strengths, not to mention big personalities.  But Mikey and his sister reached some serious "regular kids" milestones such as crawling, talking and displaying major and minor dexterity.  



Mikey's birthday cake.

I love this video.  This shows how fearless Mikey is.

This is Mart from Holland.  He turns 3 today.  I have a super weak spot for him because I think he looks a lot like my Niko.  And he always has a mischievous look on his face. 

Feeding Therapy

We do feeding therapy once a month.  Nikola's occupational therapist is wonderful.  She is helping develop Niko's facial muscle tones.  Niko's face is really firm, but underneath all that firmess is weakness.  We are hoping to help her loosen the tightness and at the same time tone her face.  Loosening up her face, developing muscle tone and pushing back her gag reflex will all contribute to the success of her eating solid foods.  So I'm definitely willing to stick to this program.  It's really important to me that Niko gets to enjoy food.  I think it's one of the greatest pleasures in life.  How can I plan a trip to Italy for her that doesn't involve gelato?

Her therapist gave us a tray for her bumpo seat, which is great for Niko to play and reach for things.  She also gave us a couple of cool tools.  One is the NUK brush.  I'm to brush the inside of Niko's cheeks with this to get her used to having objects in her mouth.  This also builds strength.

The second is a special needs feeding spoon.  This is basically the smallest, most shallow spoon you've ever seen.  It's called an E-Z spoon.  This spoon is super flexible and soft.  The tip is very small and flat so it's less likely to cause the gag reflex.

Here are the instructions for Niko's facial massages.  We are doing #2 and #4.  She will not tolerate the other massages.  I have to do this about 5 times a day.  Niko hates being fussed with but I'll try.

On the subject of headwear...

I don't know where to store this gem of a photo so why not here? When I saw this photo I knew it had to stay with me always.

Where did I find this? Oh yes, Amazon! It was via their recommendation tool. You know, "if you buy this, you should also buy this!"  However since I order mostly diapers on Amazon, it's a mystery what could have possibly summoned the BETTY DAIN HEADWEAR PROTECTOR HOOD, 12PK, ASSORTED COLORS.

"Protect hair and makeup while you dress," it says.

Oh Amazon you know me so well. My hair is 2.5 seconds from dreading and my lips are crusted with residual toothpaste. If I hastily yank a sweater over my head and subsequently wipe off the aforementioned details I may lose my current and only form of income: receiving spare change from strangers on the streets.

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.