Kindergarten boy.

today was a big day.

first day of Kindergarten for my beautiful boy.

i woke him up to get him ready for his big Kindergarten debut...

i had a freshly cleaned onesie all picked out and ready to go:)

but first i had to lotion him up so he smelled nice and fresh.

(didn't want him to be the smelly kid in class the very first day)

Mr. Handsome:  the Kindergarten edition..

oh, i was nervous.

nervous to drop him off, nervous to let him go.

nervous!!

 i tried giving him a little pep-talk, telling him it was going to be ok, everything would be alright...

but he was sort of sleeping, so it really just ended up being a pep-talk for myself.

i needed it.

time to load up, get in the van and head to school!

he finally woke up enough for me to tell him where we were going...

time for school, buddy!

first day of Kindergarten!

wait, what???

ohhh, but mommmmm.....i don't wanna go to school!!

i know, buddy, mommy's having a hard time with it too....:(

eeeek!!

we've arrived at our Kindergarten destination!

one last big hug and kiss before we go in.

when we got to the classroom they were still getting the other kids ready so connor and i snuck out and went down to the preschool classroom to visit his old teachers.

we've missed them so much!!!

i seriously contemplated hiding out in their class and boycotting the whole Kindergarten thing altogether....

but,  i decided i should at least give it a try.

so we went back to connor's new class.

 we met all his new teacher's aides.

they all seem really nice.

i tried to explain my sweet boy to them as best i could.

and then i stayed. 

there were a few other parents there too, so i didn't feel too overprotective...

but then they left.

and i still stayed.

:/

i got to sit next to my sweet boy in the opening circle time.

 and i had time to talk with all the teacher's helpers, trying to help them get a feel for my beautiful boy.

i got to see how cute all his new classmates are.

there were 2 pretty little girls, and 2 super-cute boys.

and there were 3 no shows.

maybe they were boycotting Kindergarten this year:)

and then he fell asleep.

his teacher kept coming over to talk to him and he would just slowly close his eyes....

(a little rude of him, don't you think?)

but he was pretty peaceful looking so i decided i would leave to go fill his prescription.

even though he was calm and asleep it was still hard to walk out that door and leave him there!

i rushed and went to the store, worrying about him the whole time.

i was only gone for about 25 minutes, and was sure he was going to be in some sort of dire distress when i came back.

but, here is how i found him when i walked back in the door.....

 oh, my sweet sleeping boy.

i guess i need to have the talk with him about sleeping during class....

or maybe not.

i have to admit i was a little relieved to see him still asleep, still peaceful, still safe.

we'll work on the whole 'staying awake to learn stuff' later.

and i realize i have a lot of work to do on the whole 'not being a worried mess' thing, too.

it will be a year of learning and growing for the both of us.

i'm so proud of my Kindergarten boy.

he's so beautiful.

<3

growing up.

i've been sitting here with my beautiful boy today, still trying to come to terms with the fact that he's going to kindergarten tomorrow.

kindergarten!

really, i can't believe it.

in my head i still picture my sweet boy as a little baby.

a teeny baby.

he's getting to be such a big boy.

i know kindergarten is a huge milestone in every child's life, and every parent sees it as a big deal.

i feel the same way, especially for my beautiful boy.

if you had asked me (or his doctors) years ago if this day would ever happen, the answer would have been 'probably not'.

 there was a point in time where they didn't think he would make it through the winter.

 but we're here.

we've made it this far.

he's such a mystery, so complex.

yet my love for him is the simplest, most sure thing i've ever known.

it's pure love.

i'm going to have such a hard time leaving him at school tomorrow, this i know.

i'll have to get over my own fear of change, fear of the unknown.

fear of not having my sweet boy by my side.

ill have to trust.

trust his teacher, trust his nurses.

(trust that they'll call me if there's a problem, cause i'll only be a few minutes away)

:)

 i love my son.

i love watching him grow, helping him grow up.

he'll always be a teeny baby boy to me, though.

<3

Sunday happy.

Happy Sunday.

it's been a long week.

lot's of pain for me.

new school year for my sweet girl.

MRI results and doctor appointments for my beautiful boy.

so i'm thankful for this peaceful Sunday, full of church, fancy-pants and lots of picture taking.

and kisses.

lots of sweet kisses.

aubrey's first half-week of school went well.

 she overcame her nerves and seems to be liking her class and her teachers.

i'm so proud of the little girl that she is.

she makes me happy.

 my sweet boy starts kindergarten on wednesday.....

i am nervous enough for both of us, i think.

:/

 i'm sure he'll be just fine, i just need to work on being fine myself....

i miss him when he's not with me.

and always worry about his breathing when i'm not right there to suction him.

so it'll be rough for me.

luckily i'm finally able to eat tootsie rolls again (on the opposite side of where my tooth was pulled)

otherwise, my stress level would be through the roof!

i love my sweet boy.

these 2 children bring me so much happiness, i can't even describe.

they are my happy.

<3

MRI results.....

i just got off the phone with connor's geneticist.

i called him (several times this week) and finally got ahold of him today.

i was calling for the results of the MRI.

he said he was just getting ready to sit down and look at the actual MRI, after reading the report.

i am confused more now than ever.

the MRI of course did not find anything specific that results in an immediate diagnosis.

but it did however, show some things that could possibly help point us in some direction?

what it did show was that the atrophy has seemed to have leveled off and stopped somewhere in the 3 years since his last MRI was done.

so that's good! (but confusing to me)

it seems to have stabled a bit, and has stopped shrinking.

for the time being.

 he could not tell me if it would continue to shrink later, or if it would remain stable.

he couldn't really tell me much.

the other thing it did show was 'signal abnormalities in the basal ganglia'.

(the basal ganglia is the base part of the brain, the part that controls movement)

which is not anything new, it has always shown this.

but the geneticist thinks (or hopes) that this finding can help at least point us in some sort of direction to begin some gene sequencing.

or at least rule out some other routes they could have gone.

so here's where i'm at.

my emotions are all over the place!

i mean, it's a good thing that the atrophy seems to have stablized.

it's just that now we're kind of back at square one, not really knowing anything.

i felt like when it showed brain atrophy, that was at least something we knew, something i knew, that was going on with my son, and i could relate that information when asked "what is wrong with your son?".

now i know nothing again.

i know his brain used to be shrinking, but for some reason it isn't anymore.

i know his brain is being affected, but i have no idea how or why.

i know he can't control any of his movements, but i don't know how or why.

i know he is moving, jerking, writhing, constantly, but i have no idea why.

i have no idea why.

i have no idea.

i have no idea how to think or feel anymore.

i have no idea how to help my son.

that is the hardest part.

so how do i feel?

i have no idea.

except it feels like your world has been turned upside down a little bit, but instead of just turning upside down and resting on it's head, it keeps spinning and turning and moving so you can't quite gain any sense of control.

kinda like that.

so the geneticist is calling a 'pow-wow' of all of connor's doctors, he wants to get everyone together to lay out all of connor's history and tests and results and findings.
and try and discuss what to do next.

he said he would hopefully have that scheduled for next friday.

and then i meet with connor's neuro-muscular specialist on Sept. 5th.

she will hopefully be able to relay the details of that meeting with me, along with some sort of game plan.

i hope.

i hope.

i always have hope.

<3

2nd grade: big deal.

it's my sweet girl's first day of 2nd grade today...

i am sad she's growing up!

and i'm sad my face still hurts.

(from my tooth extraction.  it's been painful and complicated. my jaw is still swollen, so it's hard to smile)

anyway, i'm just a little sad my baby girl isn't a baby anymore.

 she hasn't been nervous at all, until last night.

she got really anxious and nervous before bed and cried (broke my heart!)

but mommy talked her through it, told her she would be just fine.

(who's going to talk ME through??)

she woke up this morning, ready to face the 2nd grade!

 can't believe my little girl is so grown up.

 we had to get some good back pack shots.

okay, mom! i'm ready to go!

 i just had to wake connor up, clean out his suction machine, change his diaper, give him his morning meds, and we were all set to go:)

my BFF.

my sweet girl.

my 2nd grader.

 Aubrey and Kelsey, 2nd graders together.

one last picture before i had to walk out of her classroom and leave her on her own....

this is always the hardest part for me.

i can't believe how much she's grown, how time is moving so quickly.

i hope she knows how much i love her.

i am so proud of the little (big!) girl that she is.

love my little aubrey girl.

<3

Sunday ramblings.

happy Sunday to you!

from us:)

it's been a pretty good weekend.

busy.

got to go to a baby shower yesterday, which makes me think about babies, which makes me happy, which makes me smile.

i love babies.

:)

and i love my babies.

we love our little Connie.

it was my turn to teach again in Young Women's today.

which made me really anxious and nervous all weekend...

but it's over.

and i'm still alive.

whew!

school starts for Aubrey this week, on Wednesday.

2nd grade.

SECOND GRADE!!

noooooooo!!!!!!!

i don't want to let her go.

maybe if i just stop sending her to school, she'll stop growing??

no, probably not.

:(

they are so sweet at this age they are at right this very moment.

but i guess i felt the same way when they were younger.

and they grew.

and they're still sweet.

so maybe it only gets better.

(i'll check back in with you when aubrey hits her teenage years)

Happy Sunday to you all.

<3