Thursday, June 26, 2014

Les and Botox!!

Les received his botox injections today.  He was scheduled for the end of July, but nurse Jen pulled some strings and got him in today.
We love Jen.  She is our go-to person.  She responds quickly to our (many) emails and is so pleasant, comforting, and knowledgeable. 

The botox HOPEFULLY will help Les' excess saliva.  We all have 4 saliva glands, 2 up in our cheeks in front of our ears, and two down in our throat.  Dr. Odderson decided to try the 2 upper glands today.  The two lower glands are a bit trickier to get to, and there is a higher chance of "freezing" the swallowing function, which Les cannot afford any more of.  We agreed with the plan, and right there in the room he injected two shots into Les' cheeks.
Easy, almost painless.  I was wondering about a buy one, get one deal, but apparently not today at the UW!  Les has already heard lots of jokes about fluffing his lips and/or the other cheeks....... ;)

We won't know if the botox helps until Monday or so.  Dr. Odderson only uses botox for rehab purposes, and there are so many uses for it in that rehab clinic!  Amazing stuff.  Who knew?

My super cool cousins in eastern Washington ordered these bracelets.  It took us awhile to realize they were customized!!!  "What the sh........."Les said! Perfect timing, since our supply is gone after the golf tourney.  If you would like one, let us know!

Wednesday, June 25, 2014

Golf Tourney

Where do we begin?  What can we say?  THANK YOU does not cover it - we were overwhelmed with the support we saw last Saturday at the golf tournament.  So much work, so many people involved, so many hugs, so many tears, so many laughs, SO MUCH FUN.

We have had requests for Les' "speech", so here it is. His new Dynavox machine read it for him, pretty cool!  By the way - the machine is PAID FOR, thanks to all those golfers.

"Before I begin, I just want to give a shout out to my friend Matt Kok.  Thanks for being here, Matt.  Your dad would have loved to golf today.
Good Afternoon Everyone!
  I just want to take a little time right now to just express my, and Karen’s gratitude for the love and support shown to us and our family thru this golf event today.  It’s difficult for me to find the right words to say to each and everyone of you.  You might say that I am literally speechless!    Get it?  That was a joke. I’m speechless?  HaHa!!
First off, I want to thank Zach Fralick for spearheading this thing and getting the ball rolling about seven months ago. You are a Great Man!  When Zach first contacted me about doing a golf tournament for me, I didn’t know what to say.  I had never been asked that kind of question before.  After thinking about it, I told him I’d be very honored and humbled by the gesture.  As long as it was a tournament “In honor of Les Kooistra” and not “In memory of Les Kooistra!”  But seriously, ‘thank you Zach’.  And along with him, I need to thank the other UPS people for their help and hard work.  Gunnar Birkeland, Ed Hansen,   Eric Stalder, Rick Williams and many more I’m sure.  You guys are awesome!  
And it was amazing that you got it all done on personal time!   And I have to thank their wives for giving them the time away from family to get it done.  Because I know family time for a UPS employee is a precious thing!    Thank You ladies!
And how could I not thank the Bierlink family!!  Rod, Lana, Lance and Cody.  You guys are great!!  You people must really love golf tournaments, because why else would you do all this??    You ROCK!!
 I want to thank my kids for your help in all of this too.  Leslie and Kris, you two have really impressed me with your work and time put in on this tournament.  Of course, when Leslie went to spend extra time at her office to work on this, Karen and I got to spend more time with our grandson Kaden!  Tough duty!!
I also want to thank my nephews and niece and my parents-in-law for your love and support. I love you guys.
And Karen, you have been my ROCK!  I don’t know how I could have gotten along this far without you by my side.  You certainly are a gift from God.  I LOVE YOU TONS AND TONS!!
And lastly, Thanks to all of you golfers and hackers out here today!  And to those of you that are not here to golf but are here to show your love and support.  This couldn’t have happened without all of you.  Thank You all so much from the bottom of my heart.  I love you all.    I AM A VERY BLESSED MAN!   THANK YOU! "

God blessed us with an amazing day!

Les' good friend Pastor Ben blessed us with a prayer both early morning and afternoon tee times

Les with Zach, Ed and Gunnar - hard working UPS buddies!

Les LOVED his ride for the day!

GOOD NEWS - Tomorrow, Thursday, Les will be getting Botox injected into his saliva glands, down at the UW.  We got in (unexpectedly!) 5 weeks early and we are so thankful!  The constant salivia in his mouth is a huge issue for him.  Please pray that this procedure helps.

Saturday, June 14, 2014

Another (very sad) Goodbye

Kris' friend Matt passed away last Friday.  Kris worked with him the past couple of years - they had so much fun together.  Matt was a talker so they got along well ;)  They were both VERY particular about their trucks! This weekend is the annual logging show nearby.  Last year Matt and Kris brought their work trucks to the truck show at the logging grounds.  They camped there and bragged about their pretty trucks. Kris promised Matt he would still bring the trucks this year; he spent many hours this past week getting the trucks ready to go.

Matt's passing has been hard on Les... and Kris.  A reality check, ya know?  Please keep them and Matt's family in your prayers.  You will be missed, Matt.  We rejoice that you knew Jesus and that we will see you again some day.

Les is doing pretty well.  He got his stitches out today and everything looks really good.  He is supplementing about 900 calories per day through the feeding tube.  He was weighed at the doctors office and he has gained a few pounds!!!   He didn't feel very well through Tuesday, and Tuesday was his last ride up to Canada to join the fishing crew.  Of course on Wednesday he felt much better and wished he was fishing.  He was kinda down in the dumps for a few days.  He's been playing with the Dynavox machine, but gets a little frustrated with trying to figure it all out.  The sales rep comes Monday; that will be a good thing!  We had little man extra this week so he kept us busy AND entertained.   We are having a quiet weekend, which is nice for a change!  I am cleaning out my office closet - we need some storage for all this new medical equipment showing up.

Friday, June 6, 2014

Feeding tube -- Success!

Finally Les is in his room and settling in on 4S.  A very long day! The doctor told me all went well; Les was a trooper.  It wasn't easy finding a "window" for the tube but they did it!!  Les was awake through the procedure and could watch a huge X-ray screen which showed the barium moving through.  The tube through his nose and then his throat was quite painful, and they inflated his stomach which Les said was very uncomfortable.  He still cannot eat - not until tomorrow morning.  They want the tube to heal a bit before using it.
He says right now that the incision is getting very painful.  Hopefully we will be out of here by noon tomorrow.

We are very sad that Kris' friend Matt passed away this morning.  His first stomach ache was mid-January.  Thankfully we know he is with Jesus, and he is no longer in pain.  Please remember this family in your prayers.

Feeding tube

Well here we sit waiting for Les to go in.  Almost noon, we've been here since 8:30.  A couple little glitches.....but a really nice nurse here with us.  Les hasn't eaten since 4:30 last night-he is hungry!!  He had to drink barium twice last night.  When the doctor was telling us the risks, Les put his fingers in his ears.  We don't want to hear what could go wrong - we just want this done today!!

So, now it's 3 and I'm sure some of you are anxiously waiting!  The patient before us had complications so we sat in the pre-op for 4 hours.  They finally took Les at 2, I went to get something to eat and sat outside - fresh air!! Les' nurse texted me to call or come back to talk to the surgeon.  NOW WHAT??  Turns out the barium went through Les (very unusual).  Normally they send the patient back home with more barium and send them home......but they are instead giving him a barium enema and will still attempt the surgery.  We both agreed to this and so off they went again.  Please pray for success today!!

Tuesday, June 3, 2014

Surgery Date and Golf Tourney

Les is scheduled for his PEG surgery Friday morning at 9:45.  We are so thankful we got this scheduled! The bummer part is that he was going to go fishing with his buddy Dan for a week, leaving Saturday. Les is hoping he can drive north into Canada himself midweek and join them.  We will stay at UW for sure one night - they will be monitoring his breathing, which was a concern last week when he was in surgery.  Les has also received a suction machine.  He likes to use it to suction out all his excess saliva BUT it's not exactly something you can put in your pocket so it's not always easily accessible!  He has also started using a small patch (Transderm Scop) behind his ear which is supposed to help the saliva, but so far it's not doing a very good job.
New toys!  A BIGGER magic bullet & a suction machine :)
Also, unless you live under a rock you have probably already heard about the golf tournament that is being put on in Les' honor.  The UPS guys have a golf tournament every year, followed by a barbeque. Back in December, driver Zach told Les he would like to have the tournament in Les' honor.  Then driver Gunnar got involved and then our son Kris got involved and then our friends Rod & Lana got involved---and now it's a big deal!  These people are amazing!  Driver Ed is in charge of the t-shirts, which are being made where our daughter Leslie works.  The original thought was that we would use this benefit money towards the Dynavox machine.  (By the way, the Dynavox machine is on its way - praise the Lord!!!!!).  This machine is approximately ten thousand dollars.  Les' UPS insurance has done a great job paying for most of the medical bills so far, but they will only cover a portion of this machine.   In our ALS booklet, one of the first things noted is that ALS is such an expensive disease.  We are SO SO THANKFUL knowing that we will have help with some of these expenses.  It's very humbling.....we never thought we would be at the receiving end of any kind of a benefit!  But again, we are very thankful for our UPS family, and for the community we live in.
Here is more info on the golf tournament: