New Developments

A quick update on the Botox.  It's working great - Les has hardly any saliva.

The not so great part?  He can't swallow anything.  Not even a sip of water.  When he swallows anything he has awful choking spells.  We are thinking it's the Botox; we were told that was a possibility.  SO Les has about 6 weeks to decide which option he would prefer--lots of saliva, or no swallowing.  What a choice, eh??

He is currently getting ALL his nutrition and water through his feeding tube.  He misses eating - even his blended foods!  He misses the taste.  I suggested he just chew food up and then spit it out.  We'll see.  He's taking in 5 or 6 cans of his nutrition a day.  These feedings take awhile, about an hour each session (which is usually 2 cans).

Also an update on the Dynavox speech machine.  Not sure if I ever blogged about all the problems we were having with it.  I spent HOURS on the phone as the go between between Les and the Dynavox people.  We think it was a lemon!  They finally approved a call tag and had UPS pick it back up.  We didn't hear anything from them for several days.  And then last week a brand new Dynavox showed up with the UPS man!!  Les is happy to have it back.  He was pretty good with  using just his phone app which spoke his texts, but the machine is much nicer.  Plus the internet is on it, so it's like an iPad.

Les also received his BiPap machine, which he wears when sleeping.  I think he is sleeping much better.  It's a quiet machine, so it doesn't bother me.  And today Les received a cough assist machine.  He requested it yesterday after having a horrible choking spell.  He can't swallow at all, and had burped up what he thought was acid reflux and he just couldn't get rid of it.  We called Jen at UW and she suggested the cough assist.  Les doesn't need it all the time since he still has about 70% lung capacity, but in those situations we hope it helps.   All kinds of fun new toys at our house!

I need to give a shout out to Les.  Even without being able to speak at all, he continues to run errands for me.  He goes to the grocery store, gets gas in my car - whatever needs to be done.  If I were in his shoes, I don't think I would do that.  Pretty sure I would stay at home and not go anywhere!!  I greatly admire him for getting out in the world and being as normal as possible.

Therapy and Botox Part II

We had a LONG day at UW on Tuesday.  We had been staying out at Birch Bay so I was a little crabby pants about spending a whole day in Seattle when it was sunny and 82....

First up was the 9:00 with Physical Therapy.  We didn't expect too much from this appointment, and we were correct.  They just tested Les' balance and leg strength since he is a bit weaker.  With ALS you CANNOT overextend yourself physically or you will permanently lose that strength.  They suggested working on some balancing, walking just until tired.  They thought Les could start coming once a week to therapy.  "No thank you" we said!!   Our friend Lori (a physical therapist) can take good care of Les.

The second appointment was with Occupational Therapy.  This was a bit more informative.  We went over getting the house ready - grab bars, raised toilet seat, shower chairs, etc. etc.  We also went over tools to help with feeding, drinking, dressing.  We have a catalog to browse for items that Les feels would be beneficial.  Again, our friend Lori can help us with this.  We do want to be proactive and ready before it's absolutely necessary.

We had several hours' break until our 3:00 appointment.  On my agenda for the day was tracking down suit coat jackets for Kris' wedding.  We headed to NorthGate mall, hoping they would have everything we needed right there.  Ha!  Nothing.  But the salesman was very helpful and he looked up stores all across the US which carried that particular jacket.  I had some homework to do!!  We ate some lunch and headed back.  The traffic in Seattle was HORRIBLE all day long. 

Les' 3:00 appointment was with Dr. Hillel.  This is the throat specialist that he saw a year ago, our first appointment at UW.  Oh don't we wish it was only a vocal chord issue..........But that is water under the bridge.  It is what it is.  Anyway, we were told Dr. was 1/2 hour late so we grabbed coffee and settled in.  We finally saw Dr. Hillel about 4:30 and we were tired!  He did a scope down Les' nose to see the throat to make sure the vocal folds (cords) are still working properly.  Les' vocal folds  clamp shut; not allowing a breath when having a choking spasm.  There was also an intern in the room, Ginger the speech therapist, and a nurse.  The room wasn't big enough!  But then - Dr. said he was ready for the Botox.  WHAT??? we asked..........we were not expecting that!  Dr. Hillel said he had an order for Botox.  YES PLEASE! said Les.  Dr. Hillel is the EXPERT in this area.  He used an ultrasound machine on Les' throat as he guided the needle into the saliva glands.  On Les' right side, the Dr. had a bit of a struggle finding the saliva gland and used two needles and lots of juggling.  I think Les had just zoned out because he did not move! When Les sat up he had quite a bit of blood in his throat, but Dr. wasn't concerned.  Dr. made another Botox appointment for two months.  We have experienced that when anyone at UW realizes you are an ALS patient, they bend over backwards to help in any way they can.  A silver lining!

Throat scope

Botox into throat saliva gland

Les is anxious to see if this Botox round helps.  The other helped a little, but not much.  We will keep you posted!  He is also getting his BiPap machine this week and he is hoping that will help him sleep and his fatigue will be less.  We would appreciate your continued prayers.  As Les continues to deteriorate, we know that this road won't get any easier; we pray for patience, strength, peace, and the ability to find joy for each day.

3 Month Progress Report

On Wednesday Les had another 3 month progress checkup.  That means it's been 9 months since his diagnosis.  The past 3 months have gone so fast - we have been busy!

We met first with Dr. Weiss.  He is such a kind, compassionate man.  When Les gets a little emotional, Dr. pats Les' knee and tells him how sorry he is.  We talked about symptoms and how Les is feeling.  Dr. Weiss is ordering a bi-pap machine for Les to sleep with.  Les has a hard time breathing when he lays down - he is already propped up on pillows.  The bi-pap machine will help him breath, and Dr. Weiss thinks it will help with Les' fatigue.  We hope so!  Les has been very fatigued lately and naps almost daily.  Les then went through the lung test, and his lungs are again a bit lower in capacity.  Nothing to get alarmed about yet.  We also discussed the saliva issue.  The Botox helped a bit, but not much.  There are no other drugs to try.  Dr. Weiss recommended talking to Dr. Hillel about this - Les has an appointment with him next week to take a "vocal fold" test.  Dr. Hillel does lots of Botox on ALS patients and Dr. Weiss is more comfortable having him perform the Botox in the throat (which would be the only other option for the saliva issue).  Dr. Weiss also acknowledged weakness in Les' right hand/arm (for example he can't turn the key in the car ignition anymore) and a "shakiness" in his legs.  Dr. referred us to Occupational Therapy and Physical Therapy to start discussions about these issues.  We haven't been to EVERY floor yet at UW, but looks like we might get there yet!

We had a quick chat with nurse Jen, which always cheers Les up.  She, too, is such a sweetheart.  Les weighed in at 190, so has gained a few pounds, but is still pretty thin.  We found out that our normal lung technician, William, took his own life this past Friday.  The whole staff in Neurology was still upset and trying to deal with this loss.  We also very much enjoyed William.

Next up was Les' appointment in radiology for the new "Mic-Key" feeding tube.  The old tube was quickly switched out for the new one; no anesthesia required.  The new tube is button size; the old one was a 6" tube.   Les was all smiles after - he was so tired of that other feeding tube always hanging down, pulling in and out.  A welcome change!!

And we were done!  7:45 am to 11:30, not a bad day.  We have several appointments next Tuesday; that will be a full day.

Here is a picture of us at a recent wedding (minus little man).  David & Mikaela, you had a beautiful wedding!!  We are counting the days for Kris & Hannah's wedding!

Empty Nest (again....)

We are once again empty nesters.  We had an empty nest briefly after our daughter was married.  An empty basement - two empty bedrooms.  Lots of closet space.  Lots of room in the attic.  And then we heard the words "mom and dad, can I move home to save some money so I can buy a house?"  Um, sure??  Our son had been on his own for 7 years.  He was dating a sweet girl named Hannah.  We had hopes he would marry her.........so we agreed.  And thus he moved back home.  We did not realize how much sh... I mean stuff he had!  The closets were filled, the attic was filled, the garage was filled, all empty spaces were filled!  This boy has a problem!

Now it is 4 years later.  Yep, 4 years.  We have been looking for something for Kris for about 3 years.  Nothing was ever quite right.  He wanted property - but doesn't everyone want property?   So we kept looking..... Kris & Hannah got engaged in March.  Maybe they would live in the basement?  We have recently put a kitchen in our basement, not knowing what God would bring our way.  With Les' health issues, maybe we will need help and we could have someone live in the basement.

And then Hannah found a cute red house on 2 acres.  She fell in love, and they made it work.  They bought the house!!!  We are SO excited and happy for them. It is perfect, it is private; they have a beautiful, peaceful view out their back.  They received the keys on July 3.  A houseful of company arrived on July 3.  On July 4 Kris woke up, woke up his cousins, called his brother in law, and said "I AM MOVING TODAY!"  And he started loading.  He didn't think he had anything up in our attic.  Ha! said Les and Les went up in the attic and brought down piles.  We still have full closets and cupboards, but they are slowing emptying out.  Hannah is sorting and deciding what can go in the new house and what needs to get thrown away.   I am thankful it is her and not me.  Love that girl!!

And now I miss him.  I miss Hannah.  I miss hearing how their days were and what wedding plans were accomplished.  I miss having someone to talk to in the evenings.  I miss their friends popping in and out.  I miss Sunday night guacamole dip and movie night.

I DON'T miss the piles of laundry in my laundry room (I didn't do his laundry anymore).  I don't miss waiting for him to come home late at night (always a mom, right??)  I don't miss him taking a nap on our couch on Saturday afternoon when I'm trying to clean.  But I miss him.

In church this morning we read this verse, and I read it recently in Jesus Calling:  "I am with you and will watch over you wherever you go, and I will bring you back to this land.  I will not leave you until I have done what I have promised you."  Genesis 28: 15

A good verse to remember as our son starts his new family.  A good verse for Les and I to remember as we continue our journey with this disease.

Summer Sun and Family Fun

Yikes!  How did it get to be July 17??  We have been very busy!  LOTS of family visitors, which is so, so fun.  We have discovered that lots of activity makes Les very tired!

My side of the family had a mini-reunion the past week.  The first brother-in-law showed up on July 1 and the last sister left on July 14.  Whew!!!  The few days we were ALL together, the number of peeps was 53.  That includes mom and dad, us five siblings and spouses, 16 grandchildren - some with spouses, and 16 great grandkids.  We were missing one granddaughter and her family of 3.   A shout out to our nieces and nephews who flew in from Minnesota, Iowa, Montana, Wyoming and California.  THANK YOU!!  It means alot to mom and dad and ALL of us.  Becky at Simply Enjoy Photography took family pictures - I will share some when they are ready.   LOVE this preview:

#teamKooistra #kickALS

My Iowa sister and her family of 19 rented a beach house in Birch Bay.  Our sweet friend Joanne generously let Les & I and my California sister stay at her beach house.  My brothers didn't stay as long so missed out on some the beach fun.  The weather could not have been better.

Birthday lunch!

 

 

 

3 sisters with 3 daughters

Les' brother Howard also popped out for a couple of days.  He just wanted to hang with Les, and that's what they did.  We will see some of these people again in September for the wedding; it is so much easier to say good bye when you can say "see you in a few weeks".

Les has another 3 month check next Wednesday and he hopes to switch out his feeding tube that same day.  It will be a tube closer to his body, a "mickey" tube.  He has been quite fatigued but otherwise hanging in there.  The Botox didn't help as much as we hoped it would - he still has quite a bit of saliva.  We have mostly good days but still some down days as we continue on this journey.

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!

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.