2016…onward!

2016.  Wow, how’d it get to be 2016 already?
I know that you noticed my lack of interest in blogging in 2015, with only 14 posts last year, compared to 40 in 2014.  I’ve struggled with how much to share, now that Corrigan is older and more “aware” of his own story, though he doesn’t yet have the voice to share it himself. I’ve wrestled with how much of it all is mine to share.

Then came the dust-up in the special needs community over that very same issue….whether parents have a right to share their child’s personal story and what constitutes a “voice”…and things got so heated and emotional among the community that I left.

Here is a sample of how the issue has been discussed. An Open Letter to The Mighty

I am still not sure how much I want to share, though there is no shortage of topics at this age, but I don’t want this blog to dry up.  It is still a place to store memories….to drop photos now and then and maybe a few words too.  Thanks for sticking around during the quiet times.

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January brought hospitalization back into our lives, the first in nearly 11 months, and Corrigan spent five days at Johns Hopkins recovering from another bout of hyperammonemia.  The cause of the crisis a bit undetermined, which never sits well with me, but because his aminos looked good on arrival, his CBC panel showed no infection or anything brewing and I know with certainty he did not eat anything “illegal”- combined with zero bowel sounds upon ER workup- it is assumed that he somehow had a temporary paralysis of the intestines, leading to rapid onset constipation that led to quite high ammonia (263, ouch) and two very scary neuro events.

My boy was very unwell when we decided he needed medical care but he decompensated so rapidly in the ER, the intake nurse was shocked that the  lethargic, loopy-but-happy child she worked up minutes before was now a thrashing, screaming, biting, hulk-strengthed sick little boy.  It was insanity, I had to hold him with strength I didn’t know I had myself.  I had to restrain him, my sweet boy, while his brain was under attack….while he raged and thrashed and tried to hurt himself badly….and then collapsed into the blessed “ammonia nap” that brings him relief.

Eventually things got moving again in the bowel department and the rescue drug worked its magic, as always, and five days later he was sleeping in his own bed, seemingly unaffected by the crisis.  I don’t have to go into lots of detail, once we get a lab back showing high ammonia, the hospitalizations all pretty much go the same.  Rescue drug, fluids, labs…repeat endlessly…reintroduce protein, labs, labs, more protein, more labs….home.   It is lots of time watching tv, resting comfortably, hanging out with our staff friends, child life and our favorite hospital housekeeper until his body becomes stable and he can be safer managed at home, away from hospital-acquired disease or virus.

He was back in school today, for the 1st time since January 8th, and boy was he in a hurry to get away from me. lol. Lots and lots of one-on-one time, the lad and I shared, I don’t blame him for nearly sprinting to the bus when it pulled up this morning.  I am enjoying the silence in the house as I type.  Just keeping it real.

Here are a few grainy cell phone shots from his stay last week.  Still using an iPhone 4, still screaming at it daily for being dumb, but at least it still takes a photo now and then.

Oh yeah, getting the corner isolation room is the jackpot!

photo 1 (14)

 

photo 2 (17)

 

photo 3 (11)

 

Processed with VSCOcam with m5 preset

 

photo 4 (6)

 

photo 4 (7)

Just a small collection of my Hopkins window shots from the last few years.  I have many more, sadly.

photo 2 (18)

 

photo 3 (12)

photo 4 (8)

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