so today was exciting because UPS delivered a huge jug of glycerin to my door........

this is exciting because i need liquid glycerin to use in the suppositories i make to give to connor twice a day.

the clear bulb with the orange cap is what i give to him a minimum of 2 times a day in order for him to go to the bathroom.  or poop, can i just say poop?  so at the store they sell a box of 4 of the suppositories and they range anywhere from $5-$8.......and one box last only 2 days.  so i started buying the small bottles of glycerin a while ago and started making my own, which is cheaper but still expensive.  i could never find a bottle bigger than that small one, but when my dad was out here at Christmas time he mentioned that he thought his company distributes glycerin.........umm, come again??!  i have no idea why he's been holding out on us!!  so he talked to some people and was able to have them ship me this huge jug for free!  this is very exciting to me, i can't even tell you.  never thought my dad would be my dealer, but he's got the good stuff :)

that's the good part, i love getting things for free.  the sad part is why i need it...  connor used to be able to poop on his own. but as his disease (whatever it may be) progresses, he continues to lose function of his body.  because he has a progressive brain disease and his brain is atrophying, it effects his whole body, namely the muscles and coordination of movement.  as his brain has atrophied his muscle tone has gotten worse and his digestive system has been greatly effected. i'm not sure when he stopped being able to poop on his own completely, it's gotten progressively worse over time.  it's been years since he's been able to go on his own.  i give him the suppositories, one in the morning and one at night, in order for him to go at all.  and in the past year or so i've noticed he can't even pass gas on his own anymore, he doesn't have the muscle tone or coordination to even do that by himself.  which is really sad, because isn't that what little boys are supposed to do best??  so i help him do that too, by massaging and pushing on his little belly.  it's painful for him when he can't get it out.

it's hard for me to really tell how much function he loses on a daily basis because i'm with him all the time.  but when i think back i do notice a significant loss of certain abilities he used to have.  and that just makes my heart ache.  did i mention i love my sweet boy?