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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

Saturday, June 26, 2010

home...again....lots of updates

Well, I better just blog it all now because who knows when I will have another shot at this.

We got home today from a week in the hospital.

Ridge was bleeding. It stopped shortly.  We started the steroids again, probably too hastily.  We won't start them so hastily anymore.

He had a horrendous port infection and possibly a central line infection.  After six days of antibiotics running through both lines, we were allowed to come home.  He will continue to be on the antibiotics for five and a half more days.  This is stressful to me-- because A) his port is accessed at home.  and B) we have to run antibiotics alternately through the port and the central line four times per day.  (9 AM, 3 PM, 9 PM, 3 AM)....This takes an hour each time.  This was not a good enough reason to want to stay in the hospital, but it is a lot of extra stuff at home.  Home health delivered the supplies tonight when we got home.  The bag full of the antibiotics was huge.  We will have to do this 22 times over the next five and a half days.  sheesh. but we are home.

Wednesday is a big day for us.  We will begin an Octreotide wean.  We covet covet covet covet your prayers starting now.  I know most of you pray for Ridge daily.  This is a big time opportunity to please please intercede for him.  We want off of this medicine so badly-- he is on it 24 hours a day through his central line.  If we can come off of it....we can get that line out.  He will be able to walk, crawl, eventually run, and play, without a leash of tubing attached to him.  He will be able to take a BATH!  He has not had a real live tub bath since he was 3 months old.  That is almost a year.  By the time we get off of the meds, it will have been at least a year.  The wean will take 4-8 weeks, if it is successful.  Please please pray like you haven't before for Ridge.  This is huge in his mobility. This is huge in making his life more normal.  There is also some chance that this med is contributing to his smaller stature.  It could also be contributing to some issues we've been told Ridge has-- issues that deserve bathing in prayer.  His spleen has apparently been shrinking.  This is probably due to restricted blood flow.  His spleen is smaller than normal/smaller than it should be.  He needs that spleen to help fight infection.  This is a big deal to me.  Please pray that it IS the octreotide doing this and that we WILL be able to get him OFF of the Octreotide.  This is SO important to us!  We really really are optimistic and hopeful that this wean will be successful.  So please, come alongside us and lift Ridge up in prayer.  Let's get this baby one more step to normal!

Other news.  Monday is a big day for us, too.  Monday marks seven years for the B-Meister and myself.  B Dawg and I have made it through the first seven....which I've been told are the worst.  I can promise you our seventh was our worst.  Our fifth wasn't so great either.  This year has held so many hardships and obstacles because of Ridge.  It has been hard to be a normal family and a normal has been difficult to find any time to go to dinner together or even just sit and talk about anything other than Ridge.  Our life together has been greatly changed this year, and it is hard to type about.  I know God has a wonderful, unimaginable plan for us.  But it is difficult to remember that when your life seems so upside down.  I can't wait until ridge is off of the Octreotide and we feel like it is easier to get out and leave him with someone.  The central line is binding-- it makes it so difficult to leave him, because it is something we feel like our eyes need to be on 100% of the time.  When I am with Ridge, not a second goes by I am not thinking about that line-- I'm not exaggerating.  It rules our life.  See- I can't even type about our anniversary without coming back to this stuff.  We are ready for the difficult season to pass.  It's going to be a new world in a few years (or less) when Ridge overcomes this disease by the grace of God.

So seven years ago, B Dawg and I got married.  We looked like this:

Young...I know.  Time and life has been rough on us lately.  We've shared great moments- moments like the above.  moments like this:

and this:

 (courtesy Kelly Zoschke photography)

and this...

and this....
and this....

and this.....

and most recently...all the hospital stays.  and while a lot of this year has been more bad than good, here we are.  we've made it.  a promise is a promise-- and forever means forever.  so here we are, celebrating seven years.  hoping that we have seven more and seven more after that and after that...and that the hardest times we will ever face are behind us.  as time ages us, and circumstances rough us up a bit, may our faith remain in our God to hold us in His hands and sustain us in all things.  We may never look like this again:

but the hearts in those young bodies are the same ones that fell in love seven+ years here's to another seven, baby.

good times and bad...sickness and health...for richer or poorer....

we got this in the bag.


Kent or Diana said...


I love to read your blogs - not always what's in them but how you love and depend on our Lord! Please know that you, your family, especially Ridge are constantly in our prayers.

Diana Hawkins

Anonymous said...

Brandon, Alisha, Sawyer & Ridge-

Praying for all of you as you begin to wean Ridge off of the Octreotide today. Love you all!