Iowa Bestie and New Appointments

My best friend from Iowa came to visit. We have been friends for about 30 years. We have been through some tough times and some happy times together.  She was SO good to have around for a few days. (And thank you to her husband Evan for letting her come!). She is from Iowa ya know, so we had to do some northwest sightseeing!!

the famous gum wall

Birch Bay

Les went to eastern Washington with Steve for a few days this week.  Steve was working and Les was hanging out.   I got caught up on work after having company, AND got started in the garden. 80 degrees--are you kidding me??  Love it.

We have some important appointments coming up.  May 12 is Les' swallow test.  This test makes sure that he is swallowing properly and that no food is getting into his lungs.  That would be bad. It will also help his speech therapist in giving Les tips/help with chewing and swallowing.  The next important date is May 22.  Les will be getting his feeding tube then.  It is better to do that while he is healthy.  That will be an overnight appointment.  Les is still eating pretty good; he puts a lot of his meals into the Magic Bullet.  Sometimes he has a hard time swallowing his pills, so it will be nice to put those through the tube.

Last important date is June 21.  Our UPS friends are sponsoring a golf tournament in Les' honor.  Our son Kris and our friend Rocket have jumped on board to help with this.  So awesome to experience this support.  More details to come about the golf tourney.

From Jesus Calling recently:  "When some basic need is lacking - time, energy, money - consider yourself blessed.  Your very lack is an opportunity to latch onto Me in unashamed dependence.  When you begin a day with inadequate resources, you must concentrate your efforts on the present moment.  This is where you are meant to live - in the present.  It is the place where I always await you.  Awareness of your inadequacy is a rich blessing, training you to rely wholeheartedly on Me.  The truth is that self-sufficiency is a myth perpetuated by pride and temporary success.  Health and wealth can disappear instantly, as can life itself.  Rejoice in your insufficiency, knowing that My Power is made perfect in weakness."  
2 Corinthians 12:9 "My grace is sufficient for you, for my power is made perfect in weakness"

April Progress Report

This Wednesday was another 3 month check up for Les.  We can't hardly believe it's been six months since we heard Dr. Weiss say, "I'm quite certain that your symptoms are Progressive Bulbar Palsy, which will lead to ALS".  In some ways it seems like last week, and in some ways it seems like this has been our reality for a very long time.  We have been very busy, which makes the time go fast!

Wednesday we had a different doctor, Dr. Childers.  But, since this is a teaching hospital, we had a resident first and they both did all the same tests :).  They mostly checked his physical strength, which is good and they were pleased with that! Les has noticed a little weakness in his hands but otherwise is doing great physically.  He only lost 2 pounds so they were also pleased with that.   Next was William and the lung test. Again, Les did pretty well.  His lungs are a little weaker but still pretty good capacity.

Next up is speech therapy.  First we talked about Les' loss of speech and the process of getting a speaking machine.  Les has researched this and knows what he would like so we are checking to see what his insurance would cover.  He is using his phone app for speaking more and more but would like something a little more sophisticated.  The speech therapist then did some swallowing tests.  We know of course that this has been more difficult for Les and eating is getting much more difficult.  A swallow test has been ordered to find out what's going on his throat and what kinds of food he should and should not be eating.  We have also given the go ahead for a feeding tube, so we will wait to hear from the GI doctor and will then schedule surgery for putting that in.  We would rather be proactive with this and have it done while Les is still healthy.  It takes him so long to eat; he has starting using the Magic Bullet a lot more.....he throws his whole breakfast plate in there and makes a smoothie :). That is so much easier to eat and doesn't take nearly as long.

Next was the heart test (because of some of his meds) and normally this takes 5 minutes but this time he had to wait an hour. BUT we got a free parking pass out of it.  A very nice nurse :)  Last was the blood draw.  We were so hungry at this point that we actually ate in the cafeteria, and it was very good!  I didn't think I would see my friend Jill this day (she is an RN at UW), but she was in a class right off the cafeteria and when she walked out on a break, there we were!  We got to have a quick chat.  Love that girl.

Since we were in Seattle we hopped over to Virginia Mason to see Kris' friend Matt.  Matt has some liver issues and we were looking forward to seeing him.  BUT he was in a procedure and the nurse told us when he gets back he is sleeping, so all we could do was write a note.  We are not the only ones dealing with serious health issues!!!  We are praying for you Matt.

Waiting for Matt...see our car??

 Les and I were talking about his appointments.  They are really just to manage the disease since there is nothing to be done for this disease.  The UW doctors and nurses want to help Les be as comfortable as possible as we go through the different transitions.  And we are glad for that!  Our prayer requests:  Please pray for our frustration levels to stay low as we deal with Les becoming unable to communicate verbally.  Pray that his insurance company will cover the cost of a DynaVox machine.  Pray that he continues to stay physically strong.  THANK YOU!!!

Road trip Part II

After traveling down the Oregon and California coasts in our rented motorhome, we arrived in Santa Cruz about the same time as my sister and her kids....they were also on spring break.  My nephews came from Cal Poly along with a sweet girl named Julia.  We like her, S.P.!!!!  My sister and hubs rented a BEAUTIFUL beach house, with two master bedrooms.  A treat for sure after being in the motorhome for four days!

My sister had meals planned and so we just relaxed.  The weather forecast was rain, but we had beautiful sunny days.  God answered some prayers. We spent a day at the "Boardwalk". Fun to sit on the beach.......the kids (and Darrell!!) played volleyball. The boys actually did a little boogey boarding even tho the water was pretty chilly.  A great day

We had Darrell take some family pictures on the beach that evening.  During that adventure, THIS happened:

Little man's shirt said "will you be my auntie" and Kris dropped on his knee.  We are all so excited.  We love this girl and are thrilled to have her as our second daughter.  Well done Kris, you did good.  Aren't their faces just priceless??
Next day we spent some time at Capitola.  Such a fun little village on the beach.  We had to head out that day, on to Becky's B & B.  We spent two nights there.  Kris got to golf so he was happy, Brett got to wake board so he was happy.

I had a visit from my college roommate Jan.  We spent 4 years together at good ol Dordt College.  We had a great conversation, she knows just what to say.  You need to plan a visit up here Miss Jan!

We planned to leave California on Sunday.  My niece had a playoff soccer game so they were taking off for that.  After church and brunch our family all piled into the motorhome again.  This time we drove straight up I-5 and we decided to drive straight through.  Les drove California, Kris drove Oregon (he AGAIN got the winding pass...) and Brett drove Washington.  Topped off the trip with breakfast at the Hilltop.

How did Les do? He did great! His speech continues to deteriorate, but the boys were such a great help when they needed to be.  He does isolate himself a bit more because it's difficult to be a part of group conversations.  Les was also pretty tired the few days after we got home, but he kept saying "what a great trip". It truly was. Thanks to some of our friends who dropped off goodie baskets before we left - Lu, Rick & Pam, Barry & Doris, Dale & Gina, Dan & Kara - we loved it all!  I STILL don't know who the flower fairy is that filled my window boxes while we were gone..... Thank you to Lori and Emily for feeding us when we got back!  Thank you to our hosts, Darrell & Becky.  Thank you Sean, Mitch and Jenae for sharing your spring break with us! Thank you to our great kids and spouses for being such great travelers.  Thanks for the memories!!

Road Trip!

We decided to take a road trip. We bounced around some ideas for a family trip and this is what we came up with.  Gotta tell ya, when your kids are older and you take a family trip, you let the kids make some of the decisions and then there can be no complaining!!!  And as Clark Griswold said, "Why aren't we flying? Because getting there is half the fun.  You know that".  (From the movie "Vacation")  HA!!

Heading out to pick up Hannah!

We rented a motorhome and the 7 of us were off!!  Hannah (Kris' girlfriend) had a dental hygiene board in Seattle so we picked her up there.  She was ready to get out of town! (AND BY THE WAY SHE PASSED THIS VERY DIFFICULT BOARD!  So proud of her)  First night we had reservations in Cannon Beach and we made it by 10.  Thank goodness for Kris and his late night driving.  Right to bed!  Next morning was beautiful so we took a stroll on that magnificent beach.

On the road again......we made a stop at Tillamook cheese factory at lunch time.  Our second night was right on the beach at Coos Bay.  Again, an amazing beach.  Our little man Kaden was such a trooper!  He just hung out in his car seat..... Slept all night, eats every four hours, life is good!

Third day was a big day.  Lots of driving but the scenery is just so amazing.  I never get tired of looking at the coast.  Our God made a beautiful creation for us to enjoy!  All the guys took turns driving.  We detoured through the California redwoods.  Such big trees.  Northern California is such beautiful country, and not very many towns.  We stayed at a KOA in Willits, California and it poured that night!!!  We had had beautiful weather so couldn't really complain, but it was a dreary morning that next morning.

Wednesday was our destination day - Santa Cruz beach.  My sister Becky & family had rented a beach house there and we were joining them.  Our drive took us right downtown San Francisco, over the Golden Gate bridge.  What an adventure! and then we had traffic.....  Kind of a bummer after traveling down the beautiful coast, but we survived (with Les driving!)  We arrived at the beach house and hooked up with my sister and family.  What a beautiful place to spend two nights!!  Part II of this road trip coming soon........

Sisters and Brother Visits!!

We love visitors!  And we have had alot!  So so fun.  We have been very busy over here.

First visitors were my sister, husband and daughter from the Oakland area.  They were here the FIRST weekend of the snow.  So crazy on the first of March.  On Friday we all had gone for a long walk, out for coffee, etc.  Saturday the snow started so us girls went sledding over on the school hill.  We made a super cute snow man (we just forgot to make it level!!)   And the snow just kept on coming.........NO CHURCH on Sunday.  Are you kidding?  That happens like once every ten years here.  My niece was ecstatic, being a California girl and all.  More of us went sledding out on Barnhart hill.  Even baby Kaden went sledding for the first time!

Meeting Kaden!!

Jenae and Becky

 At this point my California brother-in-law was getting a little worried about driving in the snow to Seattle (no I am NOT calling him a sissy lala......) but once they were through Bellingham they were just fine.  Thanks for the visit and WE WILL SEE YOU SOON ;)

Next up:  Les' older sister Linda and baby brother Gawin.  They are both Minnesooooota people so came from 20 degrees BELOW that morning.  Linda has been here before, Gawin has not.  They were picked up in Seattle by Les and niece Emily; they had lunch on the Seattle waterfront and toured Pike's Market.  The very next day we headed to Friday Harbor.  We had a beautiful sunny day.  They also had trips up to Mt. Baker and out to Birch Bay.  The weather was amazing!  We ran out of time before we could complete everything on their "to do" list, but we did a pretty good job.  We'll finish that list next time.......

 

One night we had Corby and Scott, their wives and their kids over for dinner (oops, supper for those midwest people).  Corby and Scott both went to school in Minnesota in Gawin's town and Gawin kinda took them under his wing and "took care of them" while out there.  They had some fun reminiscing to do!  Scott - you missed the picture!  A very fun evening.

Corby, Les, Kris, Gawin

Linda and Gawin were here for a week.  Goodbyes are pretty hard these days, but this one wasn't TOO bad because Linda's son in Montana is getting married on Labor Day and we will meet up with them there.  We loved having them here.

We are taking a break from visitors - our family of 7 has a big adventure planned for next week, so stay tuned for that blog!  And please pray for safe travels for us!

Too Many Goodbyes

We have been to TOO MANY funerals lately.  The first one was for a member of our church - a sudden death.  Les and I were both blindsided by how hard it was to sit through the service - maybe since it was in our church, our pastor, a guy a little older than us........ We walked (ran, more like) outside afterwards and burst into tears.  Very hard.  The second service was for Marty, one of my dad's best friends.  I went with my parents, who flew up from Arizona for the service.  This also was difficult! but it was nice to be there with my parents.  A hard loss for my mom and dad.

The third was for my Aunt Nan a week later.  She lived in Seattle.  She had a tough going in her younger years, but through that started Seadrunar, a rehab for drugs and alcohol in Seattle.  Her and her husband ran this program and grew it into what it is today; along with a recycling center for the patients to work at.  Aunt Nan was the next above my dad, and now my dad is the only sibling left.  The service was so great, Aunt Nan was honored and represented well by her family.  She was so much fun, so dedicated to helping others; she will be missed by many.  My younger brother and I with our uncle and cousins:

Recently our town lost Don Smith, a man loved by many.  He was married to my cousin Nyla.  Again, a sudden illness and now his loved ones will miss him so much!!  My dad had coffee with Don on weekday mornings - Don liked to call my dad "cuz" since he married Nyla.  Another friend my dad has lost.

Another recent, difficult loss for us was our neighbor, friend and fellow church member, Ken.  Ken also had ALS.  His ALS developed in his limbs first, and the disease progressed rather quickly over the past year.  Since we are dealing with ALS, this is so personal to us and so difficult to watch.  His wife Jan walked over the other day just to give us hugs - she knows.  I had some of their girls in youth group several years ago - they are all so special to me.  The service was so well thought out and so personal - very emotional for Les and I. 

"Though I walk in the midst of trouble, You preserve my life.....The Lord will fulfill (His purpose) for me; Your love, O Lord, endures forever."  Psalm 138:7-8

Jesus Calling

"Continue on this path with Me, enjoying My presence even in adversity.  I am always before you, as well as alongside you.  See Me beckoning to you: 'come, follow Me'.  The One who goes ahead of you, opening up the way, is the same One who stays close and never let's go of your hand.  I am not subject to limitations of time or space.  I am everywhere at every time, ceaselessly working on your behalf.  That is why your best efforts are trusting Me and living close to Me."

"Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me"
Psalm 63:7-8