February Days

While we are holding our breath here in San Francisco for rain, the days have been neither sunny nor foggy.  They are simply hazy because we have not had any good rain or fog to scrub the city down.  

But I have my two rays of sunshine.  

Mila has learned to groom Niko's hair.

Mila holds up music notes for Niko while she pounds on the piano.

Mila is also Niko's personal stylist.  The hat was her idea.

One small step for Niko; one giant leap for her kind

Niko has joined the world of the mobile.  She's been improving in her Rifton gait walker.  This walker is a demo that is on loan to us.  In two days, the paperwork will go through for Niko to have one of her very own.  We have ordered this red colour because Kiril thinks of it as her Ferrari.

So far, she has not figured out how to move straight forward, she kinda swirls to get where she wants.


Or she zigzags.  And she always wants to follow her sister.


I can clearly see on her face that she is proud to be moving on her own.  I'm so thrilled about each step she takes.

21 months

Niko is now 21 months old.  She has the weight of an average 7-month old and height of an average 6-month old, being at 17lbs 5oz and 26in long.  She has given me 21 months of pure sweetness.

  

Unofficial I-Cell Milestone Chart

I often wish that I had more information or realistic expectations on the course of I-Cell, especially in times of working with doctors who do not fully understand our children. 

A prime example is my constant debate about the G-tube. Doctors will look at Niko and come to the conclusion that she is alarmingly underweight for her age, that she's off the charts, and nowhere near the curve. Of course she is!  In fact, she stopped growing at around 13 or 14 months old. They immediately go to the theoretical solution: force feed her by means of G-tube. However I try to explain to them that Niko is actually of a very average size for an I-Cell child. I tell them about the other I-Cell kids on Facebook, and that some of them reach a final weight of 14lbs. They are shocked. Some G-tube fed kids weigh even less than Niko (who is a whopping 17lbs 5oz now).

Another family in London received recommendation from their doctors to place a G-tube in their 9-month old child just because they think that she might eventually need it in the future! Their reasoning is that it's better to perform the surgery when she's young and strong, even though she didn't need the G-Tube and actually LOVES food.

I kept wishing that I had something on paper to show to the doctors to say, "Hey, many I-Cell kids NEVER need a tracheotomy. Some eat solid foods for their entire lives. This percentage can roll over and by this age.  And that we should perhaps have no expectations of speech, base on empirical data.  Etc etc."  Actually I was also just plain curious to see where Niko fell on the I-Cell curve.

No such chart exists.  It's clear that I-Cell kids cannot be compared to the growth or milestone chart of healthy kids.  I searched everywhere.  I found charts for down syndrome kids.  I even found a few charts for children of skeletal dysplasia.  But I-Cell is too rare.  There are simply not enough kids out there (maybe 60 total worldwide?  100 max?).    

So I decided to take it upon myself to create such a chart.  (I actually love looking at statistics, charts and graphs.  I find them soothing.)  I asked the I-Cell community to participate in filling out a questionnaire that I created.  I received a total of 16 completed surveys. Below is the averages based on a pool of 16 kids.  Note that not all milestones were reached by all the kids.  So each average is based on the number of kids who actually reached each milestone.