Sunday words.

happy Sunday.

fancy pants are on and ready for picture taking.

we had a good day at church, listened to some good talks, learned some good lessons.

 love these two.

it's been a week.

my beautiful boy has still been struggling, his breathing still pretty awful.  still trying to figure out when his tongue reduction surgery will be.  i'm thinking it will probably happen at the end of this month, so just in a couple of weeks.

that seems soon!

i'm still trying to wrap my head around the fact that he has to have this done, and trying to sort my thoughts out about it all.

i just know that i love him so dearly, and just want what's best for him.

it's just scary not knowing what exactly will help, if anything will help.

he's so beautiful.

my sweet girl seems to be handling it ok.

i know she's nervous for her brother.

she loves him so much!

she told me she doesn't want him to have to get a tube in his throat.

mommy doesn't either, we'll just have to wait and see.

 she's such an amazing little girl.

such a tender little soul she has.

and she gives me my daily dose of silly.....and i love her for that.

i love my children.

every day i love them more than i did the day before.

happy Sunday.

<3

options.

went to the hospital today for connor's appointment with the doctor that did his throat surgery.

i was able to show him the video i took of how connor breathes right before a full blown suffocating episode.

he agrees it's bad and that we need to do something, sooner rather than later.

we really only have 2 options: a tongue reduction surgery, or a tracheotomy. 

we are going to try the tongue reduction surgery first.

i just have to figure out when to schedule it.  it's a major surgery, they will be removing about 1/3 of the base of his tongue, hopefully making it easier to breathe because right now his tongue keeps falling back into his airway.

i meet with his neuromuscular specialist (the one who prescribed the new medication) on the 24th, so i'll wait and schedule the surgery until sometime after that.

i remember last year, when we were talking about his breathing and ways to help it......and our options were to do the throat surgery again(sculpting and lasering and all that stuff he had done before), or our last ditch option was the tongue reduction surgery.

it seemed so far fetched, like a distant thought, one we'd never have to really consider.

......................

and now we're here.

not just considering it, but actually having to do it.

and our only other option left after this will be a trach.

which is something i guess i'll have to consider if it comes to it....but i'm not going to think about that unless it gets to that point.

thinking too far ahead is maddening, and a little frightening.

so i'll just stick to thinking about today, being grateful for my sweet boy, and that we still have options to choose from.

i love my beautiful boy.

<3

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

Conference Sunday.

Happy Sunday!!

it's General Conference this weekend, so no fancy pants for us today......

we love watching conference and listening to the Prophet and other leaders of our church.

Aubrey had her Conference Bingo card out and ready to go!

i really enjoyed listening and learning from all the talks given over the past 2 days.

i look forward to conference from the very minute the last one ends.

my beautiful boy, i know he was listening too...

he's still struggling.

he's still so perfect.

i love him so incredibly much.  i am so blessed by him, so blessed to be able to care for him and be his mom.

 and i'm so blessed by this sweet girl, too.

she is such a good example to me, so excited to learn more about the gospel, so eager to listen and grow.

i love my children.

i am so grateful that they are mine.

happy Sunday to you.

<3

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

Sunday thoughts.

a bit of Sunday happiness.

my babies are my happiness.

it's been a long week, or at least it feels that way.  i'm assuming this week was the same length as the last one, just feels longer somehow.

life is funny like that.

not so much funny 'ha ha', just funny.

my beautiful boy is still struggling pretty hard.

today is day 14 on his medication.

i really don't see a difference in his movements yet.  he's been battling a cold though, so it's been hard to decipher whether he's having side effects from the medicine, or symptoms from his cold.

his breathing has gotten worse towards the end of this week.

more suffocating episodes, more frequently.

again, it's hard to tell if they are coming on more because of his cold, or if his breathing in general is just deteriorating.

  i love him so incredibly much.

my sweet girl is doing well.

she was brave and got a flu shot even though she didn't want to.

when i told her it was to protect her brother, she said she'd do it 'for Connie'.

<3

i love her.

we're hoping for a better, more comfortable week for my sweet boy.

we're always hoping.

we always have hope.

happy Sunday.

<3

too many thinks.

today i feel like i need to write, to get out of my head.

i have a headache, maybe it's filled with too much so it hurts.

it's getting cold here!

i do like the crispness of the air, but sometimes i think the cold makes everything seem more lonely.

or maybe it's just me, today.

i think i am thinking too much today.

i think.

all in all, it's been an ok week.

had parent/teacher conference with my sweet girl, and she's doing well.

(love her!)

she's an amazing little girl.

my beautiful boy has been struggling this week, with a cold, possibly with side effects from his new medication (nausea), and has been retching/gagging/dry heaving all week long.

i'm worried he's going to retch so hard that his GJ tube will come out of place.

it's so hard to watch him so miserable.

he had another 'blue' episode last night.

i can't say that i've noticed a difference since being on this new med.

sometimes i think it might be doing something, sometimes he seems more groggy/sleepy, but i can't tell if that's just because he's sick, or if he's just groggy/sleepy in a normal way.

i don't know.

i think i'm looking too hard for a change.

i just want him to be more comfortable.  i don't want him to be 'out of it'.  but i suppose if he's more comfortable that way than when he's constantly moving, maybe that'd be better?

i wish he could tell me how this medicine is making him feel, is he feeling anything from it??

i just love him.

so much.

 

that's one thing i don't have to think about.

<3