up close.

so.

it's been another long week thus far.

my beautiful boy is still struggling, much like last week and the week before, and the one before that, etc.

today is day 18 on the trial medication.

i really don't think i've noticed any difference at all in his movements yet.

except for yesterday, yesterday in the afternoon he was really tired and extremely 'zoned out'.

i thought maybe it was the medication, maybe a side effect of the upped dose....

but today he's back to being super agitated, back to his 'normal' self.

so i don't know.

i think he has just been sick lately and yesterday his body was resting.

he still has tons of secretions and has suffocating episodes multiple times throughout the day.

i have learned how to ride them out so they don't become 'blue' episodes, but i never know if they are going to escalate until they are over.

the thing that is slightly disheartening is that we were hoping this medicine would somehow help with his breathing, and i can say for certainty that it definitely has not.

but we're still not at the highest dose, we're close, but not there yet.

so maybe something miraculous will happen.

hey, it could happen.

there's always hope.

while i was sitting with my sweet boy this afternoon, i did one of my very favorite things.....

took close up pictures of his beautiful self.

i love him.

i just love him so much.

here's my beautiful beautiful boy.......

close up.

 he's so perfectly beautiful.

<3