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Jun 08

I think we’re good

Had our appointment with the neurologist this afternoon.  It was lovely, because…. we didn’t really need to go.  She answered some questions, we had a lovely chat, but really, I think we’re good.  We had an appointment on Monday with our neuro-opthamologist, and we’ve got another follow up in a month.  After that – our next follow up will be FOUR MONTHS LATER.  The swelling in his optic nerve for the left eye is close enough to normal to count as such, and the nerve in his right eye is substantially diminished as well.  Not as much as the left, but definitely better.

The surgery worked.  There was bilateral improvement, and while it looks like there is some amount of permanent damage, it won’t get any worse.  His vision is definitely a lot worse than it was pre-accident, but the important reality is that he CAN see.  Even if the right eye never improves (and it may well improve), his left eye is 20/40 and incredibly nearsighted, but he can get glasses.  He’ll be able to get his license, read, do pretty much everything he could with two good eyes.  The doctor doesn’t think his right eye will ever improve to the level of his left eye, but we can live with that.

There are still some lingering issues – his taste buds were essentially destroyed by the medication that he was on for the intracranial swelling.  His diet is crap – he literally lives on white rice with ketchup, one type of croutons with italian dressing, and KFC.  Taste buds regenerate, so that WILL improve, it just might take a few months.  His ability to self-regulate temperature is an issue too – he gets hot a lot quicker now, and is spending most of his time in his underwear (flashbacks to toddler Sam), but the doctor swears that’ll improve too.  Maybe not until the fall, but it’ll improve.

Emotionally, he’s improving every single day.  Literally, every day is better.  He’s happier, more willing to go out and do things.  He’s not in pain, and that’s made an enormous difference.  He rarely, if ever, complains of a headache, and he’s on a new med for acid reduction that’s really helped his stomach issues.

I feel like I’m coming back to myself now.  Like my son is emerging from this hell that he was lost in for months and months, and I’m getting my buddy back.  We’ve still got a ways to go, I need to get his diet under control, I’ll have to watch his weight pretty closely to make sure that he stays on an even keel.  There’s still the whole issue of his education to consider – but school in September isn’t totally off the table now.  I could see him improving to the point where he could handle it, physically and emotionally.  I’m not counting on it – but I’m not taking it off the table either.

This last school year has been hellishly-hard, in so many ways.  And Sam’s been through more than I ever imagined he’d have to face, but we’re still here.  He’ll continue to heal, to get better, to grow and change and be the person he’s meant to be.  We’ve all learned a lot this year, about community and faith.  I’ve cried all over an enormous number of doctors between here and Boston.  I’ve been stunned by the empathy and kindness of family and friends, by strangers, and people who knew us a little – the number of people who reached out, who were here for us when we were so lost and scared.  Every bit of it helped, every phone call or email or delivered meal or kind word made a difference for us.  I’m so grateful, for everything.

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