Tuesday 24 April 2012

one of these things is not like the other.

It's been a little while since my last post so, here I am to update, wax philosophic, and despite my utter exhaustion, try to be a little witty too.   If I fail miserably at any of the above, apologies, it has been a long few weeks.  *warning* this post will likely not be light and fluffy.  This blog is about real life and our real life has not been super light and fluffy lately.  sorry.

We hired a Behaviour Consultant last week and spent two afternoons doing  Mylo's intake assessment with her.  We still have one day remaining this week and then she will create his Behaviour Plan of Intervention.  It is daunting, exciting, frustrating, long overdue and sad, all at once.  I find myself answering all the same questions I have answered a zillion times in the last few months and it never gets any easier.  It's a serious kick in the gut to answer 'no' to 99% of the the 'things' a toddler his age 'should' be doing and to see just how far behind he really is.  That is why we are here though, and why we are doing what we are doing, right?  So, eventually, we can answer 'YES' to those questions and thereby ease our chronic gut pain due to the constant kicking.

In other not so fabulous news, the babblefish has left the building once again.  I'm not going to get into it, cause it makes me hurt. I will say that Rogan is less fazed by the loss than I am, as he feels the sounds are wonderful, but still just sounds. He feels we are still not any closer, at this point anyway, to meaningful communication with his babble.  I know it's the truth, but those sounds just make me so damn happy.  At the very least, we got to enjoy them for a week or two this time, so for that I am grateful.

For the last 6 months we have been trying to get a Doctor, any Doctor, to listen to us about Mylo and his eating.  I honestly can't recall if I have written anything in depth in my blog about the alarming quantities of food this boy consumes, but believe me when I tell you, it IS alarming.  Not only the quantity he would eat if we let him, but the fact that we have NEVER seen him full, even after eating enough to make him ill. Not to mention the constant food-seeking behaviour and complete inability to self-regulate. We have to lock everything up and throw away the proverbial key in order to keep him from eating us out of house and home or literally choking himself.  Mylo and his food is a full time job!

So today we saw a Pediatric Endocrinologist.  If you are not familiar with what an Endocrinologist does, don't feel bad, I had no idea either.   Essentially they are hormone specialists.  They diagnose and treat hormone imbalances and problems by helping to restore the normal balance of hormones in one's system.  We were referred to one to determine if there was something hormonal going on with M that was creating the inability for him to feel full.  Or really, anything else they had up their sleeves, we just want some answers.

After some weights and measures that told us he is now in the 50th percentile for height and the 85th percentile for weight (this is not such a good thing in their eyes) and a gazillion questions from the Endo fellow, we seemed to be no further ahead.  Then we saw the actual bigwig Dr. and she had some ideas for us.  To my chagrin but not to my surprise, they involve more specialists.  A referral to a Geneticist and an Ophthalmologist in order to test for and rule out various genetic syndromes that could account for his symptoms.  I like that they are being proactive and wanting to rule out anything physiological, THAT is what we have been trying to get someone to do for months now.  But in the end, it seems highly likely that it will come down to it being a behavioural issue. One which we will be have to try to teach, reinforce and in some cases undue new behaviours surrounding food.  What's one more challenge though? 

Our day at the hospital ended with a blood draw.  Picture me, Rogan and two nurses struggling to keep one little toddler still.... man that kid can fight!  It's a good thing too, we need us a fighter.

On a fun note, I totally sold out and got myself an iphone (only cost me $20!) and now I have gone hipstomatic crazy.  I just can't stop myself.  Be prepared for complete photo inundation.  Only love.

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