quiet saturdays

it's been a pretty quiet saturday here.  after watching cartoons and quizzing connor with flashcards, aubrey went to play at one of her friend's house, leaving connor and i to our own devices.   connor's been having a harder time breathing lately and only seems to be comfortable when i'm holding him or sitting right next to him.  if i try to walk out of the room he starts rolling and flipping over to where he can't breathe.  so i have spent most of the afternoon holding my sweet boy.....which is fine with me:)

so i went a little camera crazy again today....

i love taking close up pictures of my sweet boy's face.  

he's probably just glad it's a break from me kissing it all the time:)

i'm not exactly sure why he's had a harder time breathing.  whether it's from an increase in secretions, or because the muscles around his voicebox are getting floppy again from his decreasing muscle tone.

he had the surgery last june to trim the muscles around his vocal chords, sculpt his pallet forward and remove his tonsils and uvula (hangy ball thingy).  and it helped SO much with the quality of his breathing.

i remember right after he woke up from the anesthesia in the hospital, i was so amazed that i could hear his breath go in and out---i could actually hear the air, which was something i hadn't heard in such a long time.

but now i think it's getting worse again.  because of his continued brain atrophy he continues to lose muscle tone and function.

so whatever muscle was left around his voicebox has gotten floppy again, hindering his airway.  

it just makes it harder for air to get in and out.  i saw it for myself when they did his last scope before his surgery, every time he would breathe in or out the muscles around his voice box would just collapse into his airway because he lacks the muscle tone to use them properly.

his own throat is getting in the way of his breathing:(

i didn't think it would happen again this quickly after the surgery. 

it's just a sad reminder of how his brain is deteriorating. 

maybe they can do the surgery again to trim the muscles down and out of the way.  it is something i will be looking into.

it just makes me so frustrated for him and i want to just be able to help him breathe!  if holding him all day every day was an option i'd do it in a heartbeat.

i wouldn't mind gazing into his beautiful blue eyes every day for the rest of forever, being able to hold him close.

he might have to put up with me kissing his soft sweet cheeks every second though.

i seriously cannot get enough of his precious face.

oh, i'm so in love with this little boy.

i am grateful for quiet saturdays where i can hold him tight.

<3