it's just hard.

my poor sweet boy.

it seems like any time he goes on any sort of medicine to try and help him, it makes something else worse.

he's been on this trial med that was supposed to help with his movements, which in turn we were hoping would help his breathing.  (it did not)

it also hasn't really helped with his movements.  i've maybe notice a 10% improvement?  and that's only when he's actually awake and alert.

a lot of the time he is so zoned out and sleepy, he's not even really 'there'.

and now, since starting the new med, he's having terrible problems with his stomach and constipation.

and for Connor, this is a huge problem.

because of his decreasing muscle tone, he hasn't been able to poop on his own for almost 5 years now.  i give him liquid glycerin suppositories every day, twice a day in order for him to go at all.

well now, because of the medicine he's on, even the suppositories aren't working.  he just does not have the muscle tone to push anything out, even with the suppository.

it's causing him to be so backed up that he is waking up every morning around 4:00 just so bloated and uncomfortable.

he whimpers and whines and it is so sad and frustrating because i can't help my sweet boy.

it's gotten so bad and his stomach gets so cramped and bloated that he's been waking up with the front of his onesie just soaked from his stomach acids leaking out around his gj-tube.  he's got so much pressure in his stomach that it has no where to go except to seep out around his tube.

that also makes his skin burn because of the acid in his stomach.

i love him so much.

i feel so helpless and just wish i could take this all away from him.

i did go and pick up a prescription for a different type of suppository/enema that will hopefully start to help today.

we'll see.

i just wish there were something that would actually help my son.

he is the strongest person i know.

he is so perfect.

he is so beautiful.

 i just love him so much.

<3