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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne


The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Thursday, October 15, 2009

october 15th

so...updates.
1. ridge got his picc line out. he has two completely mobile arms now! woo hoo! apparently a lot of you thought getting that out would be a big ordeal, bc i have had several people mention that to me....so i will ease your mind- it was so not a big deal. the resident came in, gloved up, removed the dressing that held the picc in place, and pulled that sucker out. it was just a teeny tiny little catheter that went up his arm and curved in his chest...we're talking like a little bigger than a thread. it just looks like he has a scratch on his arm from where the line went in...i mean, no surgery was done, no instruments were used....but he can wear longsleeves now!
2. ridge had his octreotide reduced again. if he responds well to this, when it is time to reduce it again (next wed.), the next reduction will put the med. to zero micrograms/kilogram- or NO octreotide (scary?)....the steroid will be reduced this sunday and when it is reduced again NEXT sunday, it too will go to zero. so as of NEXT sunday, he will be on NO meds, if he continues to positively respond...this poses a question from you i am sure, bc it did for me-- zero meds? what? i didn't even know that was an option? well, apparently it is. I think "they" think Ridge is doing much better than some children w/ this disease (keep those prayers a comin!) so they want to try this. the octreotide has not started to damage his gall bladder yet (side effect), so if they had to go back up on the dose it wouldn't be a big deal. he really is on almost no meds at all right now. weird weird WEIRD! so anyway, if he continues on the path he seems to be on, when the meds are at zero, he will be monitored a few days and then we will be allowed to -- with a watchful eye on us, of course-- goooo hooooome. oh please please pray that things keep going well! we are so ready to go home. i'm ready to go home even if it is only for one day! for all of us to be HOME! to stay up super late and watch movies and have zero rules bc we are ALL HOME TOGETHER! that is what i want so badly.
3. new rules at the hospital are kind of discouraging. right now we are only allowed to have 2 visitors at a time which is not a big deal at all- the less people here the better b/c of flu infestation (which is the reason behind the rule)...not that we dont' love visitors, we do...but we don't love the flu and we don't want it. ridge can get vaccinated, i guess if the docs okay it, next friday. we have decided to get the h1n1 vaccine if it becomes available to us. so i will rest easier when that all happens. okay so the OTHER part of this rule is that no visitors under 12 years old are allowed. there are signs up and everything. think sawyer could pass for a 12 year old? this is insane to me, and we are just going to follow the consensus that some people came to, but i will not divulge their names or identities, anyhoooo-- sawyer isn't a visitor. he's a family member- an IMMEDIATE family member. so, he gets to stay. until someone tells us he can't. in which case i will most likely melt into a pile of tears and perhaps scream at some people bc one kid stuck in here...with a disease that is causing our family to be split up...that's hard enough. don't tell me i can't see my three year old. don't tell him he can't see his brother. i KNOW the health risks. we are going to get vaccinated. i KNOW i am not above the law/the rules. but i also know that we need each other right now. so until someone stops me....i will love on both my boys @ the same time in our 8th floor hangout at the hospital.
4. ridge is still having blood pressure issues- high. so he's on a second bp med permanently (well, for now)...this is working, it seems.
5. he's liking his baby food, still. he isn't eating very often but he is still maintaining his weight, so no worries, yet. he is getting strong and i think he is wanting to sit up. he isn't stable enough to sit up-- i mean, not related to his illness, but developmentally, not stable enough. he still isn't really rolling over, which is delayed/late...but he will get it. and he's so dang happy. smiley all the time. love him. and sawyer loves him. sawyer spent the week, so far, w/ me here @ the hospital, and he was SO good and so helpful and it was so fun to get to spend time with him. he hasn't really ever gotten to play with ridge, so this has been a great time for him to bond w/ his brother and share toys and help out. it's been super. so sawyer's sequestered in this room and we are playing w/ dinosaurs and watching prince of egypt 8 bajillion times and eating lots of free cereal (okay, so first of all, i am feeding him meals, also. and the cereal is probably included in the price of our stay here, so maybe it isn't free...but we sure are eating a lot of it!) i love that kid. which one? both.

peace out.

3 comments:

Amy <>< said...

Best news Ive heard all day! You will be home, safe and sound before you know it. God is good. And He STILL does miracles :)

Susan said...

So good to hear all of this positive news and steps in the right direction to getting you guys back home!! Glad Ridge is continuing to do well even with the decrease in his meds and everything! Miss you guys!

Anonymous said...

I had to post this song for you because every time I hear it, I think of your family. Especially the part about miracles happening. I believe that the Lord is working on a miracle in Ridge and I was so happy to hear that you may be getting to go home soon! That is so awesome! So here is the song titled “What Faith Can Do”. I am not able to see or hear your play list so I apologize if you already have this song on your list. Enjoy!

Tami O

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You do have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

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