it's just hard.

my poor sweet boy.

it seems like any time he goes on any sort of medicine to try and help him, it makes something else worse.

he's been on this trial med that was supposed to help with his movements, which in turn we were hoping would help his breathing.  (it did not)

it also hasn't really helped with his movements.  i've maybe notice a 10% improvement?  and that's only when he's actually awake and alert.

a lot of the time he is so zoned out and sleepy, he's not even really 'there'.

and now, since starting the new med, he's having terrible problems with his stomach and constipation.

and for Connor, this is a huge problem.

because of his decreasing muscle tone, he hasn't been able to poop on his own for almost 5 years now.  i give him liquid glycerin suppositories every day, twice a day in order for him to go at all.

well now, because of the medicine he's on, even the suppositories aren't working.  he just does not have the muscle tone to push anything out, even with the suppository.

it's causing him to be so backed up that he is waking up every morning around 4:00 just so bloated and uncomfortable.

he whimpers and whines and it is so sad and frustrating because i can't help my sweet boy.

it's gotten so bad and his stomach gets so cramped and bloated that he's been waking up with the front of his onesie just soaked from his stomach acids leaking out around his gj-tube.  he's got so much pressure in his stomach that it has no where to go except to seep out around his tube.

that also makes his skin burn because of the acid in his stomach.

i love him so much.

i feel so helpless and just wish i could take this all away from him.

i did go and pick up a prescription for a different type of suppository/enema that will hopefully start to help today.

we'll see.

i just wish there were something that would actually help my son.

he is the strongest person i know.

he is so perfect.

he is so beautiful.

 i just love him so much.

<3

brotherly love.

happy Sunday!

 

our fancy pants are on, one of us has his sleepy pants on as well...

 we had a good time at church, i really enjoyed the talks given, made me cry.  i think i'm just super emotional lately.

this morning when i woke up and turned on my computer, i got a message from my brother saying,"I hope it's okay, but i posted your Sirens post to the PJ fan club message board..."  that was this post i did the other day:
Behind Blue Eyes....: i hear the sirens....

 honestly, i was so touched that my brother read it and wanted to share.  it really means a lot to me that he did that.  and i've gotten several messages and comments and words of encouragement on the post and i'm so grateful for each one.

i write things on my blog and i post things, yes, so others can see and be updated and aware of what's happening in our life.  but mostly, i just write for myself.  i write to get things out of my head, and so that i can remember them later.

i write because i need to.

so it really means something to me when others read what is essentially my innermost thoughts and feelings, and appreciate something about it.

it's a very humbling feeling.

i'm so blessed by my family.  and friends.

and most of all, my children.

my sweet babies are the greatest blessing i've ever known.

i love them with all my heart and soul.

happy Sunday to you.

<3

i hear the sirens....

my head has been a jumbled mess lately.

i have so many things i'm thinking about that it all just gets lost inside my mind.

i've been driving a lot lately, to appointments and such, but also just aimlessly driving because it's the best place for me to try and get some of those thoughts out.  and i can listen to music.  music helps me think.

and this week i've been listening to the new Pearl Jam CD. (love it!)

you know how there are songs and music that just makes you feel things?  that you just connect with and relate to?

well the song "Sirens" on the new PJ album really did that for me....i was just driving, thinking, feeling, sorting, and that song came on and i just felt it.  i felt like it was helping me sort out my own thoughts and feelings about my beautiful boy.  and i know the actual song has nothing to do with me or my life. but to me, in that moment, it did.  it helped me put words to things i was feeling but couldn't sort through.  it helped me pull out some actual emotions from the jumbled mess in my brain.

it just helped.

so i'm going to write the lyrics here, hopefully to help put words to some of what i've been feeling.

for me, the "sirens" are my fears.  my sirens are those signs and warnings and things that are happening with my son that i try not to see or hear, but can't ignore because they are happening, happening now and more often and getting closer.  they are the things i don't want to acknowledge, but will eventually have to because they inevitably will come take my son.

they are my sirens.

here's the song:

Hear the sirens..Hear the sirens...

Hear the sirens.....hear the circus, so profound.

 I hear the sirens more and more in this here town.

Let me catch my breath to breathe and reach across the bed....

just to know we're safe I am a grateful (wo)man.

The slightest bit of light and I can see you clear....

Have to take your hand,

and feel your breath, for fear this someday will be over....

I pull you close, so much to lose knowing that nothing lasts forever.

I didn't care before you were here, I danced in laughter with the everafter.

But all things change, let this remain.....

Hear the sirens....
 Covering distance in the night.

 the sound echoing closer, will they come for me next time?

For every choice, mistake I've made, it's not my plan to send you in the arms of another man (our Savior)

 and if you choose to stay I'll wait, I'll understand.

It's a fragile thing, this life we lead ...

 If i think too much I can get overwhelmed, by the grace by which we live our lives with death over our shoulders.

want you to know that should I (you) go, I always loved you, held you high above, true.

I study your face and the fear goes away.

It's a fragile thing, this life we lead....

If i think too much I can get overwhelmed by the grace by which we live our lives with death over our shoulder.

Want you to know that should you go, I always loved you, held you high above, true....

I study your face and the fear goes away...

  the fear goes away....

 the fear goes away..

<3

so much to think about.

just got back from Primary Children's where we had our appointment with Connor's neuro-muscular specialist.

oh, i leave these appointments so much more mixed up and confused every single time....

we went in initially to see how this new med is working (or not working) and what to do next about it.  apparently we are not at the fullest dose possible, we're only about 75% there.  so we're going to keep upping it really slowly, because of how sleepy he's getting on the dose we're at right now.

i honestly don't think it's helping, just making him 'out of it', but we'll see if upping it slowly does anything to help any further or not.....

then, there are so many other things to think about.

she wants to do another EEG to test his nerves because he has no reflexes in his legs.  he hasn't for a while now, so she's worried he may have neuropathy, where his nerves are degenerating along with his muscles.

and she wants him to be seen by pulmonology to do a PFT (pulmonary function test) to see if his lungs have deteriorated and are working at full capacity or not.....if they are not and have deteriorated that will affect whether or not we go ahead with the tongue reduction surgery.....so i have the appointment for the PFT on Nov. 5th, and depending on that test we'll either go ahead with the surgery, or cancel the surgery and have to make some more serious decisions about the tracheotomy. 

:(

and she also want my sweet boy to be seen by movement specialist at the University Hospital, but they only see adults so she has to try and set that up.

there are things to discuss with them that i don't really want to talk about yet, just a lot to think about.

so that's been our day.

my son is beautiful.

i love him.

<3

patience.

Happy Sunday:)

we had a good day at church.  it was a young man's missionary farewell so there were lots of people, and a lot of families that have moved away came back to see him off.

so nice seeing familiar faces that have been missed.

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

oy vey.

i get so nervous.

but it went ok.

the lesson was on patience.

ha!

i felt like i definitely needed to learn this lesson myself!

the one thing i've learned about patience is, it's not about waiting, it's about your attitude while you wait.

i've been trying hard for a long time now to work on my patience. (having more of it)  

especially with aubrey.  sometimes i feel like i don't give her enough of my patience because i'm so worn out from using it all with connor.  and that's not fair.  i love them both so much, i love them both equally, yet i don't always have equal amounts of patience to give.

so i've been working on it.

and i really do think i've made an improvement, especially over the last few years.

i'm so grateful that my sweet babies are patient with me.

they are my everything.

happy Sunday to you.

<3