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

a child of God

happy Sunday!

we have our fanciest of pants on today.

this Sunday was the Primary Program at church.

 aubrey has been practicing her part for a while now.

and this year, they gave connor a part! (which means mommy had a part!)

aubrey got to go up and read a scripture (she did a great job!)

and for connor's part, i carried my beautiful boy up to the podium and said, "this is Connor and he is a child of God".

i was so nervous!

ha, i remember how nervous i used to get when i was little, walking up to the podium in front of everyone.......and now i'm 30 and i still get nervous:)

but i think i did ok. (and i didn't drop connor, so that's good)

several people came up to me afterward and said the spirit in the room was so strong when i brought my sweet boy up there.

and aubrey told me after that she was crying along with everyone else.

<3

i love that they could all feel how strong my beautiful boy's spirit is.

it really is something special, and strong, and pure, and true.

it is the very essence of what this life is supposed to be about, i think.

he is the closest thing to Heavenly Father that i know and can physically feel.

it was fun watching all the little kids do their parts.

 a good day at church!

and here are some more cute pictures of my two favorite people in the whole world.....

happy Sunday to you.

<3

three. zero.

it's my birthday today.

three. zero.

the big 3-0.

i have entered into my third decade of life.

i thought it would feel horrific!

it feels no different than yesterday or the day or week before.

so that's good, i think.

i feel like my twenties were so full of every kind of  life experience (most of them not so great), that i lived at least 4 different lifetimes in the last 10 years.

so thirties?

um, ok i guess.

all i care about is that my kids know how much i love them every day.

it has been a good birthday day for me.

i got to spend it with my two favorite people in the whole world, my sweet boy and sweet girl.

i got some sweet snuggles and kisses from my beautiful boy.

...and the BEST surprise EVER from my sweet girl and her friends...

our good friends and neighbors surprised me by decorating our front steps with all these cute penguins.  each penguin had a super nice word on it.

and my friend (their mom) baked me the yummiest cake ever!

i feel so loved.

i love my neighbors and all my friends who took the time to wish me a happy birthday today.

i am very blessed by all the love and kindness shown to me on a daily basis.

in the afternoon we went over to my sister's house and got to visit with her and her family, along with some of my closest family friends.

my dad sent me the most beautiful flowers.

i love them!  they make me miss him even more than usual, though.

i just want to say that i am very lucky to be where i am today, with so many people who love and care about me.  these past few years have been some of the hardest of my life, and i feel like i have been able to come out of them a little stronger and a whole lot wiser because of the things i've gone through.  i feel like i have learned a lot about life in the last little while, but also know i have so much more to learn.  i am so incredibly happy being a mom to my two sweet babies.

they are my whole world, and i wouldn't want anything different.

i truly feel blessed to be celebrating another year of life.

maybe this will finally be the year that when solicitors knock on my door, they don't ask me if my mom or dad are home.........

<3

echo

we were up at Primary Children's again today, my beautiful boy had appointment with cardiology.

he had an echo done to check and see if all these suffocating episodes have had any effect on his heart.

good news:  his heart is fine.

yay for good news!

not such great news: there hasn't been any noticeable changes in his movements since starting his new med.

but it's probably still too early to tell.

so we'll continue to wait. and watch. 

and wait.....

today is day 5 on the medication.

i have been taking video of him every day and posting it to my facebook page so i can have visual evidence of any change in movement as it comes.

if it comes.

i have discovered that it's harder for me to watch him on those videos than i thought it would be.

it's so hard to see him struggle, to be recording it and not stepping in and helping as quickly as i normally would.

it's hard to see him though the eyes of a camera lens, it's somehow different.

i just love him so much.

i hope he knows how much, i hope he can feel it even when he's struggling so hard to just be.

he's so perfect, and beautiful.

so beautiful. 

<3

a little bit of hope.

connor's new medication arrived UPS today on our doorstep.

i gave him his first dose this afternoon.

there is quite a detailed dosing schedule attached to the bottle.

we will gradually increase the dose and amount of times given throughout the day over a several week period, in order to titrate it to a dose that hopefully works for my sweet boy.

we'll just have to wait and see.

i have a lot of thoughts and feelings running through my head about this new med.

of course, number one, i hope it does something to bring some sort of relief for my beautiful boy.

i hope it can make him feel better, calmer, lest agitated, peaceful for a change.

i hope it helps with his breathing and can alleviate these scary suffocating episodes.

i hope it benefits him.

these are my hopes.

but it's also a little scary, for obvious reasons----not knowing how it affects children exactly, possible side effects or damage that could be done, etc...

and also, it's a little strange and slightly frightening in a weird way to picture my sweet boy any different than how is is now, how he always has been.

it's odd to think of my beautiful boy with less movements.

he always moves.  he's always moving.
that's just him.

to see anything different will be.....well, different.

i just hope it makes him more comfortable.

i really hope it does something for him.

he goes through so much everyday, all day.  i want him to be peaceful.

and happy!

i would give anything to know that he is able to feel happiness.

i just love him.

i'm trying not to get my hopes up too high about this medicine, but having a little bit of hope is always a good thing, i do believe.

so hands up if you've got a little bit of hope......

 <3

Sunday thoughts.

happy Sunday....

from us.

it's been another long week...

a week of keeping close watch over my sweet boy and his breathing.

it hasn't been great.

he's had small 'suffocating episodes' pretty much every day.

but i have been able to stay on top of it and prevent any full blown 'turning blue episodes'.

you just never know.

 he's so perfect.

i love him.

so much.

tomorrow the new medication we are going to try is supposed to be flown in and arrive at my doorstep.

this will hopefully help control his constant movements, which in turn will hopefully (cross your fingers) help in some way with his breathing and all these scary episodes.

i don't know how.

i don't know if it will have any effect at all on my sweet boy. 

we've tried a 'miracle medication' before, that was supposed to calm his movements right away....

and it did not.

it didn't do anything.

i'm not getting my hopes up too high, but of course, i'll always have hope.

we'll just have to wait and see, it will take a while for medication to set in and get the dosage right.

so we'll just have to wait and have patience.

and hope his breathing can stay somewhat stable for the time being.

and just love him.

 that will be the easy part.

he's so lucky he has his sister in his corner, loving and supporting him all the way.

 she is his biggest fan, his constant cheerleader, his best friend.

i love her so much.

i'm so proud and impressed with the way she constantly handles everything like such a champ.

she is such a good girl.

i am so blessed to have her in my life, as my best friend:)

and my beautiful boy.

i'm amazed every single day at the amount of strength this sweet boy possesses.

he has to fight and struggle so hard just to breathe.

he's so brave.

and strong beyond measure.

i am so lucky i get to be their mommy.

there truly is nothing i'd rather be.

happy Sunday.

<3