All About Joey

All About Joey

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Just before his last cath – 12/13
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A year later – 12/14 (NYE)

 

 

 

 

 

 

 

 

Yes, this post is long coming – and about 4 months overdue.

In October Joey was scheduled to have his first “well” heart catherization.  He’s had a number of them in his life, but all when he’s been very sick and we’ve needed to get an idea of what was going on inside of him to best treat him.  That would have be the first time we voluntarily checked in on him.  The first time we elected to do something so invasive. He let us know it clearly wasn’t time, and gave us some wacky thyroid numbers during pre-op testing.  They don’t sedate with numbers like that, so we postponed the procedure.

Tonight we leave for Boston, pre-op testing all day tomorrow, cath on Wednesday.  Shit.  Am I ready?  Nope.  Well, yes AND no.  I simply don’t like handing him off, to anyone.  So I’m not ready for that.  Am I ready to be on the other side of this, YES.  So the work right now is staying present during the unpleasant.

He’s so strong.  He’s so well.  Yet there are little hints that get me wondering.  His voice is a touch softer, his infamous red cheeks are back.  Every now and then I’ll make a little joke to someone, or question whether they just think he’s really tired.  Maybe it’s the dry heat, or maybe there is something bigger brewing.

He will be in the best of hands, and in the best of hearts.  That is the only positive I have.

A week and a half after the cath he will have ear tubes placed.  Joey’s hearing is ROUGH, he responds incredibly well to vibration, just localizes his hearing a LOT.  At almost two he has a couple of recognizable words – “all done”, “dog”, “da da”, “star”, and almost a super solid “mama”.  If you spend any time with him you’ll hear a ton of approximations – things like “I got that”, “thank you” – his versions.  And then the signs – lord, he just whips them out.  He’ll use one for a month, then keeps it in his pocket.  Until he’s ready again.  He is WILD.

We are still working on solids.  Last night he had two bites of avocado and SWALLOWED both of them.  He has a tendency to just let food hang out in his mouth.  He doesn’t “propel the bolus” <- I find term so funny for some reason.

He’s now crawling on his hands and knees, standing at a table unassisted, and has these wild moves he uses when he and Malcolm roughhouse (similar to what Malcolm and Chris used to do, it’s a lot of hugging while rolling around on the floor).  I keep trying to capture it on video, but everything stops as soon as he sees the camera.  I can’t even with this guy – I mean, really.  He loves himself so much – a good lesson for all of us.

So, no hopes going into the cath.  It will be what it is.  Okay, wait – I do have a hope, I want him to get through it and come back to me.  Whatever interventions they need to do, whatever they find, I can roll with it.  It will be a struggle if he doesn’t come back to me.  I feel like I said goodbye to him so many times last year, because you just don’t know.  The reality of it is that we are always saying goodbye, all of the time – but we also get to say hello.

That hello is going to feel AMAZING.

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4 thoughts on “All About Joey

  1. Joey is almost TWO? Stop it! *That* is so wild. Thank you for reminding us to appreciate the hellos. And little things like swallowing. Wow. So many milestones, Joey, and a brave mother to confess her hopes and struggles. Sending so much love…

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