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.