April - 3 Month Check

We had another 3 month check last week at the UW.  As we have said before, we know we won't learn anything new at these appointments.  They pretty much concur that yes, you still have ALS; and yes, you are declining.  We do enjoy seeing Dr. Weiss and Nurse Jen.  They are our friends!!  This visit confirmed our feeling that Les' lungs have deteriorated.  Dr. Weiss feels they are at about 50% capacity, and his diaphragm is weakening.  We suspected this but when you hear it out loud, it is still a bit sobering.  Les is also losing strength in his left arm/hand and his right leg - these have been the stronger limbs.   His neck is also very weak; he can hardly hold his head up.

Smiles for Dr. and Jen!!

We discussed home health care with Dr. and Jen.  We knew that we would need help, sooner rather than later.  Les is not walking at all.  I can still get him up in a standing position, but his legs are pretty weak and shaky - I will not be able to pull him up myself.  Besides that, his care takes a lot of time!  It took me a while to get the hang of this nursing thing, and I feel like we have finally gotten a schedule figured out.  But I always forget how long it takes to do anything, and then we get pressed for time........that's when we may or may not get a little short with each other :)

After conversations with Dr. Steve, nurse Kay, our kids,  some home health nurses and Hospice, we have decided to start a relationship with Hospice.  They take care of EVERYTHING, and their goal is Les' comfort.  After we filled out all the paperwork with our awesome social worker Eden, we were filled with a sense of relief.  It was a big burden off my mind, for sure.  We still have control over how much help we need, and they are willing to do whatever it takes to keep Les comfortable.  We will still need help with getting Les up in the morning and to bed at night; we are working on a schedule for that.

We continue to be blessed by others.  The cleaning fairies made an appearance while we were at UW.  I walk in our back door after a long exhausting day and I smell CLEAN - makes me cry.

These sweet girls, their sister and their mom Tammy cleaned all our flower beds one afternoon:

We received yummy meals from nurse Kay, Val, Lana, Tammy and dear sweet Lu.  Sheri has been bringing fresh chicken eggs!  Baby girl Leslie made one of our favorite casseroles and shared with us.  Our kids help with whatever we ask!!

My sister shared these verses the other day:  "This is what the Lord says:  he who created you, O Jacob, he who formed you, O Israel - Fear not, for I have redeemed you, I have summoned you by name, YOU ARE MINE.  When you pass through the waters, I WILL BE WITH YOU; and when you pass through the rivers, THEY WILL NOT SWEEP OVER YOU.  When you walk through the fire, YOU WILL NOT BE BURNED; the flames will not set you ablaze.  For I am the Lord your God, the Holy One of Israel, your Savior."  Isaiah 43: 1-3

Amen

Family Visits

We have had additional family visitors recently.  My sister Becky and her two youngest came for several days--it was her kids' spring break.  Unfortunately, it was the same week that Les' brother Howard and his wife Vicky were here!  Becky stayed with our parents, which was nice for Mom and Dad.  I haven't been able to spend much time with our parents lately.    I didn't see as much of Becky as I would have liked, but I was glad she could hang with Mom and Dad for a few days.

They saw the tulip fields!

Cousin love

 Howard and Vicky stayed with us.  Vicky and their daughter Emily went to a wedding over that weekend but Howard stayed with us to help out.  It was great to have him around.  He got the garage cleaned out for me, he washed the cars, he helped with Les.  He is a good big brother.  'Twas another hard good bye.

I got to go to a friends' wedding since Howard was here to stay with Les the evening of the wedding.  Was such a fun wedding and so good to get out! 

My girls and I!

That Sunday afternoon, cousin Ron took Les, Howard and friend Steve for a drive out and about.  Les though it was so much fun to listen to Ron and Steve talk about the history of this area - they were born and raised here so have lots of knowledge!!  (Why didn't I get a picture of them???)  Thanks also for the sweet friends who brought food while we had visitors - cousin Ruth, neighbor Jayleen, cousin Judy, amazing Lu,  my Mom.  Thinking about/making food is still one thing that escapes my brain.....
 

Les goes to the UW this week Wednesday for a 3 month check.  Where did the last 3 months go??  We always look forward to this visit and finding out what Dr. Weiss and Nurse Jen have to share with us.   I will give you an update!

A Week at the Bay

We were gifted a week at Birch Bay recently.  Thank you Dr. Steve & Cheryl.  It's amazing how you can be 30 minutes from home and yet feel far away.  The week was very relaxing - especially for me.  I work at home, so my work is always waiting in my office...........there is always laundry to do, cleaning, etc. etc. when you are at home.  Out at the Bay we just sat.  We chatted, read, and looked at the water.  We had one stormy rainy day, but otherwise we had some sun every day.

Since we were so relaxed, we decided we would like visitors.   We had some great visits!  So thankful for these dear friends who took the time to visit, and some of them even brought food!!  Sorry we didn't get pics of all of you.

These two stayed for an overnighter!!

Oops didn't get the guys!

We celebrated Kris' birthday at the Bay.   How is it possible we have a 29 year old???  Time goes so fast. We are so very proud of him and so thankful for the man he has become.

He is going to be a great daddy!

On the day we came home, we packed up and went straight to ER (see prior post).   Les has been very tired since we've been home. He goes to the urologist tomorrow.

We need to say thanks to the cleaning fairies - they made an appearance while we were gone.  Rumor has it that a Reverend in Romeos mowed our lawn.  Could he possibly be in cahoots with the cleaning fairies???  Thanks also to Pam for pressure-washing our concrete.  Judy brought more delicious food - soups and homemade breads.  DeAnna also brought us a yummy meal.  I AM SO GRATEFUL FOR THIS! Taking care of Les is becoming much more time consuming.

And yet God never ceases to amaze us. 

ER Again

We spent yesterday afternoon in the ER again.  For the past few weeks, Les has complained of a heaviness in his chest.  He has shortness of breath which we know is ALS progression, but the heaviness was new.  It would come and go.  Dr. Steve happened to visit on Wednesday night and we told him about it.  He checked back again on Thursday morning - listened to Les' lungs with a stethescope.  He didn't hear anything unusual but Les felt like the pressure was getting worse.  Les' ankles and calves were also quite swollen.  Dr. Steve thought we should get a chest X-ray and a breathing test - he decided it would be best to just drive to ER and get all the tests done there.

Since Les is ALS and complained of breathing issues, we got right into Room #5.  We had great nurses and didn't wait too long for the doctor.  Meanwhile we had checked in with nurse Jen at UW and she relayed what tests Dr. Weiss thought would be beneficial.  One of  the tests was a Deep Vein Thrombosis, which is an ultrasound of the veins in your legs.  That was a pretty cool test - kinda like a baby ultrasound.  We could hear the blood swishing around in his veins.

They also did chest X-rays, oxygen in the blood, blood tests, urine tests, and a CT scan.  Les was not happy after the CT scan - he was in a sling and just one nurse was hoisting him up and his head flopped around quite a bit.  Today he has a VERY sore neck and can't move it much.

Anyway, the CT scan showed a VERY full bladder.  This was a surprise to us because Les does pee!  He has been getting up several times in the night to pee!!!  But apparently not enough.  A catheter was inserted and his bladder was drained.  A full 3 liters was drained.   (If you recall, this happened last September and he had a subsequent surgery.)    Our bladders can keep getting bigger and bigger, and Les' was pushing up into his diaphragm and causing chest pain.  The full bladder could also affect the swelling in his legs.  The DVT did find a small clot in one of Les' legs, but not big enough to cause concern right now.

We were released just in time to go home for supper.  We were both starving and exhausted.  Today I was quite overwhelmed; I think I realized how scared I really was.  When they were talking about ventilators and blood clots, I did not like that very much.  I was almost a bit mad at Les - it was only a bladder full of pee!!!  We are going back to Les' urologist next week.

Thanks to all of you who were praying.  Thanks to "brother" Dan for visiting.  Thanks to Lu for the yummy meal that was waiting for us.  I apologize for not answering all the texts I was getting yesterday and today; I just wasn't able to keep up.  That's why I blog!!   Also, thanks to my sweet niece Dani (and Elliot and Nattie)for the dinner tonight. Uncle ESPECIALLY loved the creme brulee............

Just Stuff

Update on Les:  He is really struggling to walk.  He has been using a walker, barely shuffling along, but the past several days spends more time in his wheelchair.  He travels much quicker in the wheelchair!!  He can't get in and out of bed himself anymore, so we recently brought a hospital bed in the house.  He is a bit too heavy and tall for me to man-handle!   He has spent several nights in the hospital bed this week.   That was not a fun transition for us.  We have been married almost 33 years - didn't plan on sleeping alone this soon.........  He is still eating, but feels like the food must be smoother and thinner than before.  We are getting good use out of our magic bullet.  We talked about this the other evening, and we remembered his not eating at all;  he is very thankful that he is still eating something!!

Vitamin D!!

Les is still texting with his left hand thumb, but that arm is also getting weaker.  We ask for your prayers for continued strength in that thumb.  He is also having a hard time holding his head up - his neck is getting weak.

We are still having Dynavox issues.  I think I had noted that Dynavox was bought out by the Tobii Company.  We really like the Tobii rep and feel she is fighting for us.  Basically, our $9000 Dynavox machine is worthless to us.  Is DOES NOT have eye gaze as promised, and we are still having technical difficulties with it.  It is just sitting in the corner.  Les uses the i-pad and his phone way more than that machine.  The Tobii rep brought us a used Tobii eye-gaze computer.  Les has been working on getting used to that, but his eyes sure get tired!

 Les still has a good attitude, but he is getting tired.  He spends more time sleeping during the day.  He listens to books on tape, and LOTS of worship music.

Movie night!!

Les enjoys visits!!  We are so thankful for those of you who visit. 

Friends & Family February

Where did this month go?  Whew.  We had some visitors, which makes the time fly!!

The week before our train disaster, we had some friends visit from Iowa.  Steve has been a friend of Les' since high school.  He used to hang out at Les' parents house - Les' dad is famous for asking Steve one day "Don't you have a home?"   Steve married Rachel and she has also become a dear friend to us.  Steve is a farmer.  Les always enjoyed playing farmer, and Steve's family would let him farm with them.

Anyway, we didn't do much touristy stuff with Steve and Rachel, but we didn't need to.  We just hung out.  We did take a drive around the county one day - showed them our kids' homes, etc.  Les also wanted to share with them a meal from Syro's.  Les LOVES their lamb dinner and wanted to make sure farmer Steve tried this lamb.  So yummy.

This past week Les' only sister Linda and younger brother Gawin were here.  They came from the frozen tundra of Minnesota - 12 below the day they flew in.  They were amazed by the green grass, pink trees, crocus and daffodils blooming.

Bet she's not doing this anymore!!

One thing Gawin mentioned was driving up the "Highway thru Hell", which he watches on TV.  He also drives a wrecker so was very interested in checking that highway out.  When he mentioned it one evening, friend Rick was here and Rick said - "Let's go!"  So the three of them drove up the Coquihalla Highway on Saturday.  Crazy, eh?  That gave us girls a chance to head to the beach - Linda's request.  A beautiful day!  We had lunch at Packer's - what a view while dining!!

Leslie finding treasures with Auntie

We enjoyed having them around.  Gawin and Linda helped with some odd jobs Les had lined up for them.  The good byes for all of these visitors are extremely difficult.  We feel so far away from our family and these long time friends.  A shout out to some dear people who brought meals and/or goodies while we had visitors:  cousin Nyla, neighbor nurse Kay, friends Kara, Lu, Lori VW, Dan & Deb, Carl & Renee, neighbor Jayleen.  So thoughtful, and we are so thankful.

We had an AMAZING sermon this morning from Pastor Clay on Philippians 1.  He talked about Paul in chains, and some of us (Les) in chains - how to use these chains to advance the gospel.  He talked about courage, and finding courage in weakness and death.  He spoke to our hearts and we were greatly encouraged.

Up Up and Away

Les had a very special day today.  He rode in a helicopter!  This was a gift from Grandpa Wes (technically he is our son-in-law's grandpa, but we have kinda adopted him).  Wes talked with Les about a helicopter ride last summer but it never worked out.  Wes called Friday night -- we made a date for today.

Les' brother Gawin and sister Linda from Minnesooooota are here visiting; what a fun day for them to share!

This is the crew watching the helicopter do a fly over.  The pilot knew where we were going to be so promised to check in.

A very special day.  The weather was amazing, especially since it is only February!   Les has been grinning ever since we found out about the ride on Friday night.  Pretty sure he is still grinning tonight............  Thank you Wes and Carolyn.  You and your family are VERY dear to us.