sleepy

this week has gone much the same as last week, my beautiful boy is still struggling, especially with his breathing.

he's either really agitated, or really sleepy.

today he's sleepy.

he had a rough night, and rough morning.

and now he sleeps.

it's hard to tell if this is the medicine working....?

and the hard part for me is, if this is the medicine working, is it really a good thing?

i'm not sure if being zoned out and sleepy all the time is really that much better than being agitated.

the most difficult part for me has been that when he gets less agitated and more sleepy, he just seems so sad.

when he's sitting in his carseat and is starting to zone out and almost doze off, he has this look in his eyes that is so incredibly sad.

sometimes silent tears start falling down his face.

i cannot tell you how much my heart breaks every time i see him like this.

i don't want my sweet boy to be sad.

i don't want him to be so out of it on meds that he's barely aware of what's going on around him.

i don't know if he likes it better that way, or if he'd rather deal with his constant movements, the never-ending agitation.

i wish i knew what he wanted, what he wants his mommy to do for him!

the fact that his breathing is still awful, and that the medicine hasn't improved that at all is the worst part.  that was the one thing i was hoping would be most affected by this new med.

so now i just have to decide if staying on the medicine is worth it or not.

he's up to his full dose as of today--9 pills total, 3 in the a.m., 3 in the afternoon, and 3 at night (all crushed and dissolved in water and given through his tube)

i'll keep giving it to him at least until i meet with his neuromuscular specialist on the 24th. 

then we'll decide from there, i guess.

 we have an appointment with the dr. that did his throat surgery tomorrow.

so we'll see how that goes, too.

this little boy, this beautiful little boy is my heart.

 i just want to do what's best for him.

i hope i can figure out what exactly that is.

<3