High Chair

While the girls are asleep and I'm sitting in front of my laptop, here's a photo of Niko sitting in a high chair for the first time.  She's propped in there with a blanket.  And moments after I took this shot, she flopped over and nearly gashed her forehead.

Not quite ready yet.  But I took out Mila's old chair hoping that Niko can soon join us at the table.  Perhaps watching us eat will give her more interest in solid foods.  At the moment when I put any food in her mouth, I can see her little brain processing the following thoughts like a machine, "This is not food.  This is not food.  Eject.  Eject.  Eject."

New things are about to surface

I’m a wanker. 

Niko was fussy all week and I didn’t know why.  Sometimes she would scream out in sudden pain, and for that I gave her Tylenol.  I just did the usual, fed her, bathed her, checked her diaper, nursed her to sleep. Dot dot dot.

Today as she was gnawing at my fingers I felt the ridge of her bottom teeth coming in.  Poor little girl is teething and I was too dense to notice.  Why would I assume that my I-Cell child with thick gums wouldn’t grow teeth?  I’ve seen photos of other I-Cell kids smiling with snaggle sets of teeth.  So I’m a wanker.

Time for Oragel city!  This little girl's smile is about to change.

 I’ve been MIA lately because I’ve been a bit busy.  Niko’s appointments are piling up and Mila is feeling neglected. 

More stuff that Mila says

I don't know where a 3.5 year old gets this stuff.

Last week, Mila was in the bath and she said this out of the blue.
Mila:  Obama doesn't want people being shot by guns.
Kiril:  You're right.
Mila:  What does Romney think about that?

I swear Kiril and I didn't say one word to her about guns or Obama's views on gun control.

Julian's Eulogy

When a mother has to make all the arrangements of a funeral and a proper "send-off" for her baby, it's best to be consumed by the tasks.  Busying herself with all the checklists and caring for other family members are the best way to stay sane.  Focus on other things.  But after all that has been done, none of that ever feels like enough.  How do you tell the world just how incredibly special your baby was and how much he meant to you?  How he was so much more than just a sick kid?  How you have to bury a huge part of yourself when you lay your child to rest?  Atonella, mother of Julian, wrote a very touching eulogy for a boy whose spirit can never be summed up by words.  But she did a good job trying.  

***    

Dearest Julian,

Your arrival into this world was much anticipated, and when you arrived on the evening of the 9th of September , 2011 we were overjoyed to find out we had another male addition to the family. From the moment you were placed in our arms we instantly fell in love with you. We lived the first few hours of your life oblivious to your struggles however soon discovered that you were different to other babies. 

You spent the first 5 weeks of your life in hospital where you began to steal the hearts of all the nurses and doctors who met you. We learnt that you had a very rare genetic condition called I-cell. We were told you would only be with us for a short period of time. How short no one knew for sure, but a few years at best. 

And so we began to learn the first of many lessons you would teach us - to appreciate what you have in life and to never take anything for granted. From the moment you were born, you were such a sweet baby with such intensity in your eyes. You were such a wise soul and we knew we would do anything in our power to protect you from life's cruel ways and to enjoy you as much as we possibly could. We learnt to focus on the present, knowing that each day with you was a gift.

We loved having you home with us, especially Daniel who flourished in his new role as big brother. From day one he totally accepted you for who you were, never questioning your differences. He never showed any sign of jealousy towards you and loved playing with you, making you smile, always wanting to hold you. We were constantly amazed by how sweet, loving and gentle he and all his little cousins were with you. Deep down they must have all understood that you were our special little angel who needed our extra love and attention. It was impossible not to love and adore you.

We learnt to cherish and celebrate the firsts that you had rather than focus on the ones you would never have. These are just a few of our fondest memories of you.
Your infectious gummy, often cheeky smile and crazy fluffy hair; 
Your little chuckles; 
The way you held tightly and squeezed our fingers; 
The way you communicated to us by kicking your legs and waving your arms when you were excited; 
The way your expressive blue eyes followed Daniel's every move; 
The instant smile on your face whenever we walked in your room; 
Your love of kisses, tickle time and peek-a-boo; 
Your face lighting up when we pretended to eat you and whenever we put Mickey Mouse on for you; 
Learning to hold rattles and toys and clapping your hands; 
The way you blew kisses at us; 
The way you responded when we told you we loved you; 
Your sweet voice and first word calling out “Da Da”; 
The way you played in the water and were always so chatty at bath time;
Your first Christmas and first birthday. 

All of these things are so treasured because we were always hopeful, but never sure that we would be able to witness any of them. Whilst you were only with us a short time, we will hold onto and cherish these memories for a life time.

You were the happiest in the last few months of your life making it so much harder to say goodbye to you now. We would have given anything to have more time with you. The love in your eyes melted our hearts every time we looked into them. It was impossible to see you smile and not smile back. The minute anyone looked into your beautiful big blue eyes with those long eye lashes, they instantly saw beyond your illness into your sweet wonderful soul. You have stolen the hearts of everyone that had the pleasure of meeting you.

We would like to thank our family for their ongoing love and support. We would not have been able to face the many obstacles and challenges during our journey without their help. You held a very special place in all of their hearts and they will miss you immensely. Thank you also to the doctors, nurses and staff at the Sydney Children’s Hospital who knew you well and worked tirelessly to help you get better during your various hospital stays, and special thanks to Dr Greg Rowell who always made himself available to you. And thank you to the families of children with I-cell and other rare diseases from around the world who have provided invaluable support and advice, and who have become a second family to us.

And lastly a very special thank you to you Julian, for fighting so hard for the time that you were able to. You were our precious little warrior and your strong will and spirit amazed us all. You have inspired us to be better people, better parents, and you have brought our entire family closer together during your short life. 

You taught us that no matter what life deals you, you can still smile. No matter how unfair life can be, you can still love and be loved. 

We can only thank you for the pleasure and privilege of being your parents, and are comforted in the knowledge that you are in a better place now where your little body is free from sickness and pain. We know your I-cell brothers and sisters in Heaven are welcoming you with open arms, excited to teach you all the things you will now be able to do. 

Run free sweet Angel, breathe easy and sleep peacefully. Please watch over us until we meet again one day. You are forever in our hearts.

Love always mum, dad and Daniel

RIP Julian

Another I-Cell child passed away yesterday after battling respiratory infections.
This I-Cell family lives in Sydney, Australia (only minutes away from where I lived while I was studying in Sydney). He was the only person currently diagnosed with I-cell in Australia.

My heart breaks.  These poor little sweethearts, gone before they can even put weight on their legs.    
Rest in peace Julian.  September 9, 2011 - January 29, 2013.

More photos

I just want to purge my phone of all these photos and videos to free up some space.  I'm sure no one is interested in seeing so many photos of Niko, but this blog is pretty self indulgent.   

I used to get really sad when I see siblings (especially sisters) play together.  I mean, I still do.  I had dreams of Mila and a healthy Niko running around, laughing, fighting, protecting each other, keeping each other company, growing up and growing old together.  And now I'm really treasuring the sister time they share together.  

Floor time with Mila.

A very unusual sight around my house - this is the first time Niko actually tolerated tummy time.  A few days ago she stayed on her tummy for about 5 minutes.    

Off the Charts Small

Last Friday we went to another skeletal dysplasia clinic.  We met with 10 different specialists.  They were all worked up about her weight.  "She's off the charts small" they all said.  She is now 12lbs 13oz.  Though they were alarmed about her weight, they were casual about the solution.  They suggested that we try the G-Tube, or at the very least an NG-Tube.  Like it's no big deal.  

It's as if they were saying, "Oh your hairstyle isn't working for you, try bangs."    

Inserting a tube, by surgery, directly into Niko's stomach and feeding her through a bag isn't no big deal.  

Even the NG-Tube, which does not require surgery, is painful to think about.  An NG-Tube is a thin tube that runs up your nostril, through the nose, past the throat, and down into the stomach. 

And they delivered this suggestion like, "Oh if you don't like the scissors required to cut bangs, try a hair clip."  I understand that these are options to consider if Niko is not feeding by mouth.  But so far, she's feeding quite well, a lot better than even a couple months ago.  She takes about 20oz to 27oz of formula or breastmilk a day.   

I know Niko is small.  Yes off the charts small.  But that chart doesn't apply to her.  She shouldn't be compared to healthy babies anymore.  In the world of I-Cell children, Niko is where she should be.  I think that I-Cell kids reach an ultimate weight of anywhere from 13lbs to 20lbs.  I made it very clear to all the doctors that I'm happy with where she is.  Her stomach is completely full after a feeding.  And when I push her to feed more, she spits it up. She knows when to stop.  I'm completely fine with her staying on the small side as long as she's "healthy" for her length and able to meet her very modest milestones.   

She actually looks the healthiest she's ever looked.  She's doing very well.  She has made huge improvements over the last month.  She's now very engaged and social.  She makes direct eye contact with people and smiles often.  She can extend her arms and reach for objects.  This is her newest accomplishment and a pretty big deal in my opinion because soon she can potentially chose her own toys or fetch her pacifier.  I would love for her to gain as much independance as possible so that she can enjoy the world she lives in and make her space work for her. She now bats at objects and plays with toys.  If only she can improve on her sleep then we'll be over a huge hump. 

Here she is reaching, batting and using both hands to bring toys together.  

She's learned to suck her thumb at short intervals.  She's on her way to self soothing!