Wednesday, December 24, 2014

Feeding the Brown

Last December Les was newly "retired" from UPS.  He wanted to feed the UPS boys on Christmas Eve morning.  He knows what this month is like for these guys!  He wanted to feed them again this year.  He conferred with his dear friend Rose and she whipped up breakfast for 50.  I went along to help serve this morning.  Thanks to Rick, Gunnar and Janna for their help setting up and getting the coffee, juice and plates there.

Thank you Paula and Kristi for helping!!

We hope you appreciate your UPS driver.  These guys are working 12-14 hours a day.  They will be back at it again on Friday. 

Les came home tired, and sad that he wasn't working alongside these guys anymore.  He misses the craziness of it all.  He says to be thankful for your ability to work.

Merry Christmas!  We have a quiet Christmas Eve.  We have our Christmas with our kids on Christmas morning, and will have dinner at my parents later in the afternoon.  We have some family coming in for the holidays, and we are very happy about that!  Remember the reason for the season - JESUS!!

Saturday, December 20, 2014

New Wheels

Les got his new wheels.  His chair was delivered recently.

We are very fortunate to be able to borrow Geri's van.  Her husband Marty, who was my dad's very good friend,  used this van.  Les' chair needed a bracket on the chair to fit into the bracket that was in the van.  It was gonna cost a near fortune to put that thing in.  But between our friend Barry, our son Kris and our son-in-law Brett, they figured it out themselves and got the bracket installed!  Les had SO MUCH fun that evening hanging out with the boys!  Thanks also to David for his help, and to Dustin and Rick for checking in.

We sold the Explorer to our friend Joey.  That all worked out so well!! 

We have been enjoying just being home.  No appointments at all this month besides Les going to Physical Therapy twice a week.  They are trying to loosen up his shoulder a bit.  His right hand is pretty much useless and his left leg is really dragging.  But, he is eating and swallowing and enjoying that! We would ask for prayers that his left hand stays agile - that hand is key to his texting/emailing communication.

We are thankful for continued visits from neighbor nurse Kay.  Besides checking on Les' health, she brings yummy baked goods along!   Dr. friend Steve also visits often.  Les looks forward to those visits - he can talk to Dr. Steve about anything.  We have had lots of visitors lately and we are enjoying the business of the season.  We pray that you, too, are enjoying this Christmas season, and more importantly, the REASON FOR THE SEASON!

Wednesday, December 3, 2014

Les' Birthday

Les had a pretty good birthday!  When we got to church that morning, we saw this:

That's cake for the all the people!!  We didn't see that coming.  At the end of the service, the congregation sang happy birthday to Les.  Thanks to Darla and Fran and their small group for this surprise.  Another reason we are so glad to be a part of this church family.

We had lunch with our kids and my parents.  A beautiful SUNNY, crisp day.  Kris and Hannah left right before our small group came that evening.   Good thing Les (and Kris) got a quick nap in that afternoon!  Our small group has been meeting for several years now.  We started out as random people who signed up for a Bible study; now we call them our family. Through thick and thin.
 Thanks for all the texts, messages, cards and shakes :)  Les is very thankful for all the love.

Saturday, November 29, 2014

Ebenezer Stones

Happy Thanksgiving!  Our church has a tradition on Thanksgiving.  If you go up front and share something you are thankful for, you may take an Ebenezer Stone (I Samuel 7:12) as a reminder.  Our church service was on Wednesday evening, always a special service.  I truly wanted to get up and share, but I didn't for two reasons.  1) I was a really long ways from the front (because of the way the chairs were placed) - it would have taken me a long time to walk up there  2) I was a bit concerned that once I had a microphone in my hand, I would have "lost it".  So often I am on the edge of losing it, even when I am feeling strong.  Does that make sense? 

Anyway, I want to share for my Ebeneezer Stone.  Last Sunday we had the opportunity to write a thankful note on a leaf, and put it up on a tree in the front of church.  Les wanted me to write that he was thankful for the "joy of his salvation".  I did, and I hung that leaf.  At the Wednesday evening service, Roger mentioned how thankful he was for the joy of his salvation, AND how we as Christians so often kinda forget about that, and that thankfulness/joy gets put on the back burner.  I thought back to Les' thankful leaf, and I thought, how true!  When you are faced with dying, what would you be thankful for???  More than likely you would be most thankful for the joy of your salvation.  As is Les.  We right now are thankful for many things, but nothing else matters as much as that hope.

Les has been saying for months, since he could not swallow ANYTHING, that he was going to eat mashed potatoes and sit with his family at Thanksgiving.  For a long time that did not seem possible.  And just last week he was told to eat thin liquids only.   Well, if you know Les, this will not surprise you:

Les smoked the turkey on his Traeger grill.  That turkey was so good.  The carving has been handed down to Kris - thanks Kris, you did a great job!!

Wednesday, November 26, 2014

Special Visitors

Last weekend we had some very special visitors.  My cousin Jesse and his wife Cheryl were in town for a wedding.  My cousin and I grew up in southern California together.  He is my age, so of course one of my favorites.  I have a scar on my upper lip from when he threw something at me, back when we were about 5.  I still love him though.  And his wife Cheryl - what a dear.  I wish we lived closer together than 14 hours - I think we would be VERY good friends.

 We had a good week last week with no trips to UW.  Unfortunately, we have one this week.  I truly am getting tired of those trips - mainly because of the awful traffic in the city!!

Les is doing well.  He eats some real food almost every day (along with his liquid diet, of course).  Scrambled eggs, a pancake, some bacon, a piece of pizza!!, soup - and usually a shake a day.   Cousins Ron & Judy stopped in the other day.  She made a yummy squash-from-her-garden soup.  It was so good - Les really liked it!  (And Happy Birthday Ron! we forgot to tell you that day).   Les has gained a couple of pounds - yay!!  His breathing is great.  His breathing is so quiet after that noisy, messy trach tube.  His right hand/arm/shoulder continues to weaken, which is frustrating.  He really can't do much with that hand anymore.  Also his left leg is starting to drag, which makes me nervous when he is walking.  Apparently the dominant limbs are the first to weaken.  Strange, huh?  Please pray that his left hand stays strong.

Wednesday, November 19, 2014

Mocha Shakes

Les' swallow test last week went as we figured.  Deanna, the speech therapist, told Les that he was swallowing (no leaking!!), but with difficulty.  His tongue doesn't work AT ALL anymore.  He can't keep his lips pressed together.  The swallowing muscles in his throat are slowing up.  BUT he was swallowing.  Deanna suggested thin liquids only.  She explained it would be easier for Les if his head was tilted back a bit when swallowing.  This has been easiest for Les when reclining in his chair, since he can't really keep his head tilted back on his own.
SO, Les is trying different things and figuring out what works and what doesn't.  One thing that Les has missed eating/drinking is a mocha shake.  He LOVES them.  Teacher niece Emily texted one afternoon and asked if he needed anything.  Yes, he did - a mocha shake.  The next day, pastor friend Ben asked if Les needed anything.  Yes, he did - a mocha shake.  These shakes were from two different coffee stands in town.  As most of you know, there is not a shortage of coffee stands in our town!  Our friend Tana found out about these mocha shakes and insisted that were she works had the best mocha shakes.  Okay, Les said, prove it.  Sunday after church Tana brought one of those over.  (This was 3 mocha shakes in 4 days!!).  Les decided that Tana was right - that mocha shake was the best.  He has also tried eating soup, which works pretty well.  Neighbor Grace once again showed up at our door step - this time with several almond sticks and homemade pea soup.  I have been enjoying the almond sticks and Les also enjoyed the pea soup.  So yummy!!!

Seriously - who does this??? 
Back to the Seattle trip last week.  Les knew I needed a break from Seattle, so he asked his friend Rolf to take him.  Rolf is a farmer; he made the time to take Les.  This was the first appointment I have not been to in a year and a half of appointments.  It was a weird feeling when Les left - guilt mixed with relief.  I have seen a swallow test before so we both felt it was an appointment I could miss.  Thank you very much Rolf - I very much enjoyed the day off. 

Tuesday, November 11, 2014


Whew, LONG day yesterday.  We figured it would be about an hour appointment with Dr. Hillel, including getting Les' stitches out and the swallow test.  We should know better by now!!

Leslie and Little Man came along with us this trip, since it was just the one appointment and we didn't have to be at UW until 3:15.  Leslie needed to pick up her wedding ring after getting it cleaned in the city-- so we had some fun passengers.

While waiting at UW, Leslie, Little Man and I had popped up to the 8th floor to visit Nurse Jen.  We had a fun visit with her!  Little Man, like his grandpa, thought that Nurse Jen is pretty awesome.  Les and I finally saw Dr. Hillel about 4:30  Dr. Hillel chatted with us about Les' concerns with the saliva.  Dr. thinks we need to give it more time.  He reminded Les that this was a pretty invasive surgery and it might take awhile for things to settle down in there.  In the meantime, Les will go back on the meds to help control saliva.  Dr. Hillel also told us that he was NOT able to get the swallow test for this day.  He was quite upset about this, and we appreciated that.  While sitting there, Les received the email that the x-ray swallow test will be this Wednesday (grrrrrrrrrr).  Dr. Hillel went ahead and had Les swallow a bit of water, AND HE SWALLOWED IT!  Praise the Lord.  Dr. said to go ahead and start with swallowing some clear liquids now until Wednesday.  We questioned why we even had to do the test, but Dr. said he really needs to make sure there is no leakage after this huge surgery.  OKAY.............

Dr. Hillel had something going on next door to us - he was in and out of there the entire 3 hours we were hanging around.  People coming and going, tears, phone calls.  We felt bad for him and for whoever was in that exam room.  One of the reasons everything got pushed back so much, I guess.

We then had a conversation with the Speech Pathologist.  She was pretty helpful explaining the stoma and how the new swallowing will work.  She talked with Les about HME's (Humidifier plug) which Les will need to use after his stoma is completely healed.  Finally, we had to wait for Nurse Carol to come in and take out the stitches.  The side stitches went pretty well, but the stoma stitches were very painful.  Les took a break and decided to have some painkiller put in.  Duh!!  The stoma stitches took awhile.  But now that all stitches are out, Les is turning his head side to side again, and the area looks great!
On the way home, Leslie and I grabbed a burger and sweet potato fries to eat on our ride home.  A bit down the road, Les asked for a fry.  And then another...........he was eating took a long time to get them down but he did it!!  HUGE SMILE on his face. (Don't tell Dr. Hillel!!)  This morning he is again drinking a bit of water and some apple juice.

We are thankful for these small things.

Sunday, November 9, 2014

Post-Op Surgery Update

We've been home since Monday night, so I figured I better get an update out!

Overall, Les is doing pretty well.  His incisions look good and are healing nicely.  He is breathing so much easier.  He has had a bit more saliva the past few days, which is a bit of a concern.  His whole neck has been stiff and numb so we are hoping and praying that is the reason for excess saliva.  Tomorrow, Monday, we go to Dr. Hillel to have the stitches taken out.  Dr. will also do a swallow test.

Les has been a bit down off and on the past several days.  He is a bit discouraged about the saliva and he is quite anxious about the swallow test.  He is SO hoping and praying for the ability to swallow SOMETHING and he is afraid he won't be able to swallow anything.  Please pray that he will be able to swallow!!

We have had very timely visitors this week!  One evening he was pretty down and several different people popped in.  When the last one left he said, "I guess I needed some company - I feel much better"!  We had an issue with our pond yesterday morning.  Les and I were both out there working in the wet and mud.  He was trying to explain what he needed done with the pump - and that kinda thing is NOT my forte.  Needless to say we were "having a moment".  Just at that time friend Dale stopped by to drop something off....he took over as Les' pump assistant and I went in the house and cried.  Again, a very timely visitor!  And once I have a good cry like that, I'm pretty good again for awhile. :)

We do covet your prayers.  Please pray the saliva gets under control.  Please pray Les will be able to swallow a bit.  And if you ever feel like popping in for a couple minutes, please do so!

Monday, November 3, 2014

Home Sweet Home

We are home!!!  I had planned on coming home Sunday afternoon to get some work done today and then go back to UW tonight.  For some reason last night I decided to stay.  Nurse Kelsie had said, No, not going home Monday.  We had a really busy weekend with visitors and I was tired so decided to just stay.

This morning when I saw Les, he was pretty perky! The doctors at 6:45 had mentioned MAYBE he could go home tonight.  Well, we both went running with that.  Les got dressed in sweatpants this morning; he walked without any support; he got in and out of bed; he sat in a chair for several hours.  We asked nurse Megan what we had to do to go home.  She said she would work on it.  We had a stoma cleaning session planned for 3 (Les' opening in his throat is called a stoma). Dr. Hillel surprised us at one - we thought he would come around 6 pm!! He was so pleased with Les' progress and said we could go home. Praise The Lord! We still figured it would be around 6 or 7 before the orders got through.  My brother Don surprised us about that time, 1:00.  He lives in eastern Washington and drove over just to visit.  He helped pass the time.  All of a sudden at 3:30 nurse Megan came in waving discharge papers and we were out of there by 4:30.  I was so thankful to have my brother to help load everything up and push the wheelchair!!

When we got home this dark and dreary night, the cleaning fairies had returned.  My house has not been this clean for a very long time.  Lawn is mowed, flower beds are cleaned out, soup is in the fridge.  You have NO IDEA how much we appreciate these acts of love.  Thanks for all the prayers, the cards, the visits (didn't get a picture of Pam & Brandi!!), the gifts.....
Day 1 - not sure Les remembers this visit!!
Pastor/friend Ben
Had a GREAT lunch/visit with these girls Friday
Always an adventure with Emily......
Happy Birthday Leslie!  And SURPRISE from Alaska nephew Mark  

Saturday, November 1, 2014

Things Are Looking Up

Saturday morning here at UW is pretty quiet! No traffic this morning and the medical center is VERY quiet.  We aren't used to that!

Les got moved to a regular floor last night.  My friend Lori was here for the afternoon; she had gone to get a cup of coffe about 6.  While she was gone two nurses came in and threw all of Les' stuff on the bed, unplugged all his tubes and wires, and took off!!  I had to grab all my stuff and Lori's stuff and try to keep up.  He is on a floor with several trach patients.  It's quieter, but the nurses don't come as quickly when called.  Weird to see so many people with trachs!

Les had a much better day yesterday.  First thing in the morning he got up and walked with David from PT (David is who we work with on the wheelchair fitting).  Les walked twice more yesterday.  Now today he has made the rounds twice already! Niece Emily came and spent the night with Lori and I last night, so Emily got to walk with uncle this morning.  We also had visits yesterday from Pam and Brandi, Sheri and Kay.  I had a great lunch with Lori, Sheri and Kay.  Ben spent some time with Les in the morning; he and Kate popped back in later.  Thank you all for visiting!

Today is Leslie's birthday.  Our kids and grand baby are coming down and will spend the night.  Les is resting up for the excitement.   No talk of going home yet and I think Les is okay with that.

Thursday, October 30, 2014

Tough Day

Les had a tough day. If you could see his wound you would understand why.  My parents spent the night in the same hotel as I so they drove me to UW.  We got to the room around 9 this morning.  Les was still very groggy from pain meds.  He said he was awake every 15 minutes through the night.  We hadn't been there very long when PT showed up.  She wanted to sit Les in a chair.  She had blue streaks in her hair so my dad asked her how they got there??

Anyway, she got Les in a chair but his blood pressure dropped, he got very dizzy and light headed.  Right about then, 8 people showed up in the room to discuss Les (just like on Grey's Anatomy!).   It was a little crazy for awhile, and Les was not feeling well at all.  PT disappeared so the charge nurse had to come help get him back in bed.  The docs all thought Les was doing great.  He was wondering about feeding, so they said they ordered his nutrition.

Les was then able to snooze and I was so amazed that he wasn't "hucking" up gunk all the time AND not constantly suctioning saliva!! Around one daughter-in-law Hannah and her mom picked me up for lunch.  When we got back to the room Les still had not eaten and he was still not feeling well and was getting a headache. Apparently the order for nutrition had not gone thru!!  Poor guy hadn't eaten since Tuesday night and all he had in his system was pain meds!  He finally got a feeding going around 4.  Sweet student Landi (who we have known since she was 4) showed up and it was so fun to visit with her!! She will be a very good nurse some day; she was very helpful.  Hopefully we will see her again tomorrow.

When I was leaving a couple interns were making the rounds.  They again said Les is doing great.  They thought maybe Les' head/neck pain was from surgery and their pressure on his neck while operating.  Les is staying in ICU again and I am glad!  He needs a good night of rest and some nutrition.  I am sorry I cannot answer all your texts and calls.  I am also very tired.

Wednesday, October 29, 2014

All is Well

Surgery went well! I said good bye to the patient at 8:30 this morning as they took him into OR.  A surgical nurse called me with updates every two hours, which was so nice. I ran back to our hotel to meet Leslie, who had driven down this morning.   Nephew James and his wife Kelsie popped in to say hi.  Leslie and I tootled around University Village; it was great to see the sun!   After we were back at UW we didn't wait in the surgical waiting room very long and here came Dr. Hillel, around 2:15.  Everything went well; surgery didn't last as long as they had expected.  Dr. was very pleased.

The anesthesiologist  called a bit later from the recovery room and said she had a patient who was giving her a thumbs up!! And, Les was NOT on a ventilator!!  Praise The Lord!!  She said he will probably need one tonight since he will be so tired, but so far so good.  My parents hooked up with Leslie and I about this time, and we PATIENTLY waited to see Les in his ICU room.  When we finally saw Les about six,  we were a bit taken aback with the wound sight.  Confirmed the fact I am not nurse material.... Les was very groggy, but able to communicate with texting.  Soon Dr. Hillel popped in and wanted to take out all plastic trach tubing!  We did not expect that so soon.  Dr. Again confirmed all went well.  Les has a bit of pain (duh!!) but his sweet nurse was working on that.  He is in very good hands.

I am pooped, a very long day.  Thanks for the prayers; we both commented this morning that we knew people were praying because we were both so calm and at peace.  Thanks for all the messages; we cannot answer you all back!!  More updates tomorrow.

Tuesday, October 28, 2014

A Special Sunday

We experienced a God filled Sunday morning.  Les was invited to "speak" at his friend Ben's church.  Ben has been preaching on Job, so Les' words fit right in with Ben's message.

After the sermon, a sweet girl sang "Oceans".  When Ben had told Les she was going to sing this song, Les showed Ben that this song was on Les' list of favorites.  She did a BEAUTIFUL job.  And then Jeff walked to the front of church and wanted to share how he has known Les - meeting Les as a UPS driver on his route.  They realized they were both Christians and then realized they both knew Ben - it was a very cool story.  Jeff and his wife have had some medical struggles in their life with their sweet boy Jensen.  Jeff had some powerful words and we so appreciated his sharing.  It's so amazing to see how God weaves friendships and stories throughout our lives!

Ben and Les have been friends for over 19 years.  He was not a pastor when they became friends - just a crazy Canadian, eh?  He was single when they became friends.  It's been our privilege to witness his marriage and now Ben and Kate are raising two fine young men.  Les walked with Ben through his journey to become a pastor.  What a great thing for Les to have a pastor as one of his best friends as he walks this journey!  Ben has been invaluable to Les and we thank God for having Ben in our lives.

Thanks again to our friends, family and neighbors who came to church Sunday morning to support Les.  We truly are blessed!

Friday, October 24, 2014

Surgery Scheduled!!

Les' larynx surgery is scheduled for next Wednesday, the 29th.  We spent most of Tuesday at Pre-op appointments at UW.
My view in waiting room
Who knew?  First we needed a pre-op with the nurse who works with Dr. Hillel.  She went over the actual surgery (even tho she's never been involved with one like this!!).  She told us that along with Dr. Hillel there will be a fellow and a couple of residents involved.  She gave us this diagram, which is  a pretty good picture of what will be going on.  Les has a video of the surgery - if you want to see that, you can come and visit!
Les' trachea will be pulled up and stitched to his throat skin.  Hopefully by the time he leaves the hospital, he will have no plastic trach to mess with, or suction out, or clean.....  His swallowing will be direct through to the esophagus,  so no chance of aspirating since it will be separated in surgery.  He is hoping and praying he will be able to swallow more than just thin liquids.  While Dr. Hillel is in that throat area, he is also taking out two of Les' saliva glands.

Our second pre-op appointment was with the nurse and anesthesiolgist.  They went over all Les' physical stuff, making sure his heart is healthy for surgery, etc.  This nurse talked about AFTER surgery.  What to expect when he wakes up (lots of tubes, will be in ICU) and the duration of his stay in the hospital (5 to 7 days).  Sounds like he will got LOTS of attention while he is there - again, he is kind of a unique case so everyone wants to be involved :)

Last appointment was a (quick??) replacement of his feeding tube since his has been leaking a bit. They said it would take a couple of minutes - HA! Overall it took about an hour;  the actual swap out took about 5 seconds.  At this point of the day, we were exhausted and hungry and ready to get out of there!

SO, please pray for peace about all of this, and also for a successful surgery.  Because of his condition, there are of course more risks with this surgery, but he is willing to take those risks in order to have a better quality of life after surgery.  Les is actually pretty excited.  The reasons he is doing this surgery are:  A)  No more saliva.  He has had SO MUCH lately and it is such a pain to be messing with that all the time.  B)  He will be able to breathe easier through his trachea hole - no plastic tubing in the way.  And he won't have to suction and mess with that plastic trach tube.  C)  The ability to hopefully eat and swallow again.  D) Chances of aspirating will be minimized.

FYI, Les is once again "speaking" this coming Sunday morning, this time at his friend Ben's church.

Thursday, October 16, 2014

Three Month/ONE YEAR!!! Check

Wendesday Les had his regular 3 month check with Dr. Weiss, the neurologist.  It also is the one year mark since he received the diagnosis.  What a year it has been!

On our way home last evening, Les was kinda down.  He said "ya know, they never tell me good news.  They just confirm what I already know - my symptoms are getting worse."  Yes, this is true.

Les' first appointment of the day was with the wheelchair specialist, who had a wheelchair rep there.  They went over all the options with Les and Les made some decisions about what he would like to order.  Les isn't getting EXACTLY what he wanted, but it will still be a pretty cool chair.  He had those two guys laughing several times.

Next up was Dr. Weiss.  We barely got to see nurse Jen, which is a bummer.  We talked with Dr. Weiss about the larynx surgery, and he is all for it.  He said it is a "cutting edge" surgery but feels it will benefit Les.  His excess saliva will be drastically improved; the plastic trach can come out and Les will be able to get more air in, PLUS not have to deal with cleaning/suctioning the plastic trach.  We were still quite hopeful about Les' swallowing; Dr. Weiss wanted some swallow tests done.  That 45 minutes with Dr. Weiss goes WAY too fast.  We like him so much.

The next appointment was with the speech therapist, Deanna.  She did some minor testing on Les' swallowing.  She confirmed that his tongue does not move at all - which will affect his ability to swallow solids.  She also suspects that along with that, his swallowing "muscles" have probably gone downhill.  She will perform an X-ray swallow test while Les is recovering from surgery.  She said he should still be able to swallow liquids, and maybe blended foods.  Les was pretty disappointed over this.  On our way out, he did a quick blood test to check his liver (because of the meds he is taking).

At this point, he was pretty hungry.  He can feed with his "kangaroo" bag in the car but of course it was plugged and nothing was coming out.  Didn't want to stop in traffic!!! so he was patient until north of the city when we could pull over and he could at least get some nutrition in by direct syringe.  Didn't help the mood out at all!!  But when we got home we realized the cleaning fairy had made an appearance again AND an applesauce fairy had stopped by.  Love those fairies.

That evening, this was the Jesus Calling I read:

I shared it with Les.  We are feeling better.

Please continue to pray about this big surgery on the 29th. 

Sunday, October 12, 2014

Les' Interview/Sunday Sailing

A couple of Sunday's ago, Les was "interviewed" in our church.  He had been asked several months ago and it finally worked out.  He is using his Dynavox to speak.

We wish this video showed the standing ovation Les received at the end - we LOVE our church family.  Thanks to our family and friends who came to support Les that morning.

That same day we went sailing.  We left home and it was bright and sunny so we wore shorts and tank tops.   But - the bay was socked in by fog!  We first ate our lunch in the galley and finally headed out.  Our dear friends Bruce and Jermaine were our skippers and she provided our delicious lunch. (Jermaine and I work for the same sailing business) We didn't get to sail as much as we would have liked that day, but at least we got a taste of sailing.  Les has wanted to do this for awhile.  Our kids came along; our power boating/wakeboarding boys were very patient with this slow pace of sailing.
When we went to Europe a few years ago, we spent a lot of time with these two.  We had never met Bruce before, and what a blessing that Les and Bruce hit it off!  They were two peas in a pod - spent a lot of time looking for "wee fee".  Bruce and Jermaine made that trip so much fun.  We don't see them a lot but when we do, we laugh.  And then we pray.  We were scheduled to head to Europe with them again this week but realized awhile back we had to cancel.  I'm sure they won't have any fun at all.
Hangin in France

As Les contemplates this larynx surgery (see prior post), please pray that he makes the right decision and that he is at peace with that decision.

Tuesday, October 7, 2014

'Twill be a BUSY October

Today was the first of many trips to UW this month.  It was a foggy drive early this morning but once the sun came out this afternoon, it was a beautiful fall day.  The turning trees are so so pretty and the moon rising this evening was amazing.  God created a beautiful creation!

This morning our first appointment was with Dr. Hillel, the larynx doctor.  Les was scheduled for Botox but had decided against it.  He feels like he is getting a bit of swallowing back and doesn't want to lose that!  Les mostly wanted to discuss the laryngectomy surgery.  We had a good discussion with Dr. Hillel about this and Dr. is quite confident this would be a successful surgery.  What Dr. would do is remove the larynx.  He would take the top of the trachea tube and attach it to Les' trach opening in neck and that would be Les' breathing tube (and the plastic trach tube could be taken out!).  Dr. would create a separate tube through the esophagus.  This would allow Les to swallow again (hopefully!!) and the chance of aspirating would be much less.  It's a bit more complicated than this, but in a nutshell this would be the procedure.  Dr. Hillel has done 5 of these in his career, which tells us how rare it is.  BUT if Les can eat again and decrease his chance of aspirating, we feel it would be a good thing. Doctor would also remove two of Les' saliva glands at the same time.  This would be awesome because of all the excess saliva Les has--and then no need of Botox anymore!

Second appointment was with Physical Therapy to fit a wheelchair.  We found out today that a wheelchair can take up to 2-3 months, so we felt like it was time!  Les is tall; if our insurance would cover most of a wheelchair, we feel it would be beneficial to custom order one.  He is getting more unsteady on his feet and we know that he will be dependent on a wheelchair in the future.
Crazy driver!!
Last appointment was with a new doctor in a new department.  Dr. Benditt of Pulmonary.  This ended up being a 2 hour appointment!  First we met with his associate, which is normal at this teaching hospital.  Then Les did some testing with Gil, the lung guy. He could only do a simple lung test through the trach tube, but what he could do was encouraging to us.  Gil felt like Les' lungs have not deteriorated too much since 3 months ago.  Another more sophisticated test will be done in the future.  Gil also worked with Les on the cough assist machine (which we already have) and showed Les how this helps with coughing up gunk through the trach tube.  SO much more efficient than the small portable suction machines we have!  We FINALLY met with Dr. Benditt.  He agrees that the larynx surgery would be a very beneficial surgery for Les.  He would like Les to participate in a sleep study after the larynx surgery.

All in all, it was a very encouraging day.  Les at this point is excited about trying this surgery.  We were encouraged with all we heard today.  Next Wednesday is our 3 month check with Dr. Weiss and we will double check with him about the larynx surgery.

Thanks for your prayers today.  Thanks to the soup fairy and the window cleaning fairy.  We are loved and we feel it!!

Wednesday, October 1, 2014

Another Surgery, Another Success

Les had his prostate surgery this morning.  It was at the urology clinic and we were very thankful for that.   We like Dr. O'Keefe alot - he is very direct and just tells you like it is.  Surgery was at 10:30 and they told me it would be an hour.  I drove away to run some errands and I have to confess that I was a little angry.  So unfair!  Why this on top of everything else??  My tears come at strange times and this was one of them.

I was back in an hour and had just sat down in the waiting room when I was called back to post-op.  What a relief it was so fast!  Les was groggy but gave me a thumbs up.  Whew!!  The post op nurse and I sat with him while he was waking up.  It wasn't too long and he asked for his phone and was typing away.  He wanted the nurse to watch a YouTube video.  What??  I didn't know anything about this.  Apparently his friend Rick had showed him the trailer for "Dumb and Dumber II" and Les thought it was appropriate for this situation.  After him and the nurse were cracking up, I got to watch it and YES it is VERY appropriate!!  The doctor came in and gave us a good report.  Before he could leave Les wanted him to watch the video.  Dr. O'Keefe also had a good laugh, and was probably late for his next surgery!!  Rick, we will be calling you..........
 You only need to watch the first couple of minutes:

Les is home and sleeping/feeding.  He hasn't been able to eat since last night.  We are very thankful the surgery went so smoothly.  I am thankful for his humor.........  Once again, the nurses were very kind to him.  I came home to soup in the fridge and I am very thankful for that, and for all your prayers.

I hope to blog soon about Les and his "interview" on Sunday.  Stay tuned!!

Friday, September 26, 2014

ALS Walk

Last Saturday was the annual Walk to Defeat ALS in Bellingham.  Our Team Kooistra/Kick ALS combined with Team Strike Out ALS.   We walked for Les and in memory of Ken.  There was another team from our town representing Nelda.  We never ran into Nelda and we are very sorry about that.  How did we miss those bright pink shirts??  It was a beautiful day!
SOME of Team Kooistra
Thanks to everyone who came out to support Les.  We appreciate the continued awareness of this disease.  The Bellingham goal was $45,000 and the walk raised over $80,000.  I think the ice bucket challenges has increased awareness of ALS.

Les walked half the walk - 1.25 miles.  At the half way point he took a break and rode the scooter the rest of the way.  Pretty snazzy.  Thanks Jan!

Yes the honeymooners joined us.  We are so thankful they are home safe and sound.  They saw God working that week and were confident He was watching over them.  Prayers were answered!!

Sunday, September 21, 2014

Another New Development

Never a dull moment around here!  On the day of the wedding rehearsal, when 50 people were coming for dinner, Les had a semi-emergency visit to the Bellingham urology clinic.  He spent several hours there that afternoon.  I was not able to bring him (we had 50 people coming for dinner!!)-- thank goodness for brother Howard!  However, Howard had to leave mid-appointment to pick up his kids who were flying into Seattle that afternoon for the upcoming wedding.  THANKFULLY, a sweet friend was in Bellingham and wondered if there was anything she could do for us that day....... so she delivered Les home safe and sound.  Thank you Doris!!

Les was having a prostate issue.  He was wore out after his long afternoon and unable to attend rehearsal.  He perked up a little the next few days and did really well at the wedding.  He took a break while we were eating dinner at the wedding reception and had a feeding in the house.  THANK YOU to those of you who took the time to go to the house and visit with him.  He appreciated it!

Over the past week Les has had two follow up appointments at the urologist.  The first appointment he had a scope done, and this past Thursday he had an ultrasound.  We met with the doctor after the ultrasound.  Les' prostate is growing and pushing the urethra closed.  This is very common among men.  It is not ALS related; however the doctors believe that because of the ALS, these kind of issues speed up.

Les will have surgery on October 1.  The surgery will take place right in the urology clinic - they have anesthesiolgists on site.  He will be able to go home the same day.  He will probably be a bit (????) sore for about a week, and then should be back to (his) normal.
ALS walk on Saturday
This coming week we have NO appointments.  We are looking forward to a quiet week!  Prostate surgery is October 1.  Les will see Dr. Hillel, the throat specialist at the UW, on October 7.  On October 15 we have a 3 month check with Dr. Weiss at the UW.  We aren't really sure where the time goes!  Our little man is 9 months old today!!  Craziness.

Thursday, September 18, 2014

Kris + Hannah = LOVE

A perfect day, a perfect wedding. Being the parents of the groom is SO much easier than being the parents of the bride.  Not nearly as stressful.

We helped set up on Friday.  The ceremony and reception were in the bride's family yard.   A very large tent was delivered, porta potties were delivered, tables and chairs were delivered. LOTS of flowers were brought in - Kay of Seven Sisters Design did an amazing job (it helps when the bride is a good friend of the florist).  Hannah's mom Jan did a great job of organizing and directing.
Sister set up


I'm thinking that too many people were praying for a nice day - it was was sunny and 85.  A little warm! The groomsmen in their suit coats and pastor Ben were pretty toasty standing in the sun.  I don't think the rest of us were too bad - but that beer after the ceremony sure tasted good.

The ceremony was beautiful and God filled.  The bride and groom wrote letters to each other and that made me cry.  Kris is a great writer- he writes beautiful cards.   Aunt Vicky played the REAL piano, which was a treat.  Niece Emily, nephew Phil and friend Lori sang "Shine on Us" which also made me cry.  They sang that song at our daughters wedding.  Praying over our children at the end of the ceremony was very special to Les and I.
Mr. & Mrs. Kooistra!
Time to celebrate!! The reception was so much fun.  Dustin and Averyl were awesome MC's.  The toasts were great; Les' speech was meaningful.  Our son even spoke, which is pretty close to a miracle!!  The food by Rose was amazing.  Dancing with friends and family is so so fun.

As parents it is such a blessing to see your children marry a Godly spouse.  We are blessed to have Brett and Hannah in our family.

 THANK YOU to everyone who traveled to get to the wedding.  We had family fly from Nebraska, Iowa, California, and Patterson Washington ;)  Newly married nephew Daniel and his bride Jackie drove from Montana (they married on Labor Day!).  Thank you Randy and Jan for your amazing daughter and for this wonderful wedding.