"This button.  Right here!"

 He's so damn smart.  By the end of the week, he was terrorizing Kinder Major and their cousin, monopolizing the mini John Deere for his own nefarious purposes.

That is where it gets some people.  He doesn't LOOK sick. Most days he isn't.  There are little things that stick out to anyone watching closely, though.  At just a few months shy of his second birthday, he weighs less than his sister did at ten months old.  He is just under the third percentile for height.  His head, however, is charting at a whopping 30%.  See? I told you he's smart.

The newest addition to our cast of misfit characters, we'll call him Pater Pueri, fiercely insists that there is nothing wrong with him, just like he fiercely insists that he is PP's own son, blood be damned.  I love him for many many reasons, but those two may have been what sealed the deal for me all that time ago.

He's not incorrect in that assertion; there is nothing wrong with our son.  Our son seems to be experiencing some... technical difficulties... if you will.

I posted a bit ago about the result of our visit with the genetics team, an appointment that was a year and two months in the making.  There were no definite answers.  That status... remains.  Frustratingly. 

Tonight is no different as frustration goes.  I'm up, feeling unwell myself, and to occupy myself away from my own gastric distress, I sit and play armchair diagnostician, constantly asking myself "Okay, if this is another dead end, where do we go next?  What do we try?  Who do we see?"

My little Bug.  He was conceived under less than stellar circumstances, and he hung with me through my body's silent but bloody coup d'etat, to be delivered unto me purple and surly-faced, leaving me utterly and endlessly smitten.  His young life has been eventful, and will continue to be.  My young life will grow gradually older, striving every minute to do for him what I simultaneously spend every minute doing for his sister: making sure that there is only the shadow of the universe's chaos that could sentence me to watching my little loves whisper away.

Bug update

Today was the long awaited appointment with the genetics team.  We were referred there for suspicious hyperpigmentation concurrent with a neurological disorder called Neurofibromatosis type I.  (NF1 for short.)  Additionally, the possibility of one of the many mutations of Cystic Fibrosis has been on the table for a long time, now.

There are many things that were said during the appointment that I'm sure I'll miss in this note, but here goes.

In regards to the NF1, he has a big head and a small stature.  That, combined with the cafe au lait stains, the gross and fine motor delays, and the speech delay has led the team to conclude that he is definitely diagnosed, with a 75% surety. The blood test for the other 25% is $2k out of pocket.  We're going to take the 75%.  Now, what does this mean for him in the future?  No one knows.  He could develop nodules in his brain, on his spine, on his nerves, in his muscles, on his skin, or in his eyes.  By the same token, he could never exhibit another new symptom.  He may not speak, he may.  He may fall into the autistic spectrum, he may not.  There's a lot of may/may not's with this one.  He goes for a recheck in a year, unless new developments arise.

That out of the way, there is definite concern for his slight stature.  Height and weight fall just under the third percentile for him.  With all of the GI issues and his continued failure to thrive, having the sequencing done for Cystic Fibrosis was a definite.

In regards to just his slight stature, there may have been some malabsorption and malnutrition during the puking/diarrhea times.  In addition to the may/may not's above, his grown may/may not have been stunted, and may/may not even out later.

Overwhelmed? Yes.  But that is where we are.  Love you all, xoxo