Bedtime Body Positioning with a Trach

There is so much to sift through while navigating ALS.  Jonathan has had his trach for 2.5 years now.  When we first had it placed we had a lot of questions about sleeping. (If you ever have questions, don't hesitate to ask)  We wondered if we needed to bring in the hospital bed, would he need overnight care, would he get bed sores from not turning, how would that influence transfers etc.  ALS is so different for everyone, so take this with a grain of salt.  Honestly, you really can't compare your methods with others but just glean and sift what works for you.  Jonathan has slept in our regular queen bed in the exact same position all night long for the past 2.5 years.  I have no idea how this man has been able to tolerate not moving for 8 hours at a time, but he does it.  I love and marvel at him daily.  This is absolutely not for everyone, but enabling him to stay in our bed has been therapeutic for all of us.  A wheelchair is isolating for us and him so evenings in bed are a slice of heaven.  Being able to sleep next to him and access his suction machine through the night without getting up out of bed every time has been a life saver for my sanity.  Again, this isn't going to work for everyone, but if you sift and glean anything helpful its worth it.  This is a video of how we position him at night. (Bless my sweet 9 year old for being videographer.  I do get a little dizzy watching the video... be wary all ye seasick sailors!) 

How can you not love this???  Every night before bed Anna crawls up next to Jonathan and they read a book together on a YouTube channel called "Story Time with Ms Becky".  She and her dad have spent hundreds of hours snuggled in a ball in bed.  It is all the kids' favorite place.  We read scriptures as a family every night before bed and if Jonathan is in bed it is always a fight for the Dad spot.

Condom Catheters

Single handedly the greatest addition to sanity in early ALS life was the use of condom catheters.  When Jonathan was first diagnosed (2016) he developed an urgency associated with having to use the bathroom.  He was still walking but when he had to go to the bathroom he easily lost his balance.  The minute he had to urinate he had to go to the bathroom NOW and walking to the toilet was like navigating a mine field.  He had more falls associated the unpredictable and immediate need to urinate than anything else.  One night he got up to go the bathroom and I awoke to a death crash and water spraying everywhere.  He had lost his balance and fell wedged between the wall and the toilet.  He ripped the toilet paper holder out of the drywall, broke the water pipe to the toilet and was found in the most kerfuffled predicament with his skimmies around his ankles I have ever seen.  I hope there are replays in heaven.  Because although in the moment it was an awful fall, I believe it would make for comedy gold on replay.  So here's a quick clip about the use of external catheters:

I went back to look for a picture of Jonathan after he fell that night.  While scanning pictures I found these taken the evening before he fell and a few of the bruises after.  Seems like a lifetime ago -

This photo golden nugget is a random finding of a picture of 

Jonathan with Dr. Richard Huffaker (longtime buddy).  

1.  He is the reason we were able to get an ALS diagnosis.

2.  Rich is an ENT.  That means he has been with us every step of the way.

He placed the trach.

He changes the trach.

He does house calls on Valentine's Day @11pm to stop bleeding.

He drafts prescriptions in holy places. 

3. Never a truer brother in the brotherhood.

4.  If the earth were filled with Huffaker's all would be right in the world.

And below - a smidge of war wounds from water pipes and toilet paper rolls.

All you ALS people know these battle wounds well.

Team Gleason Shower Chair

 This is the shower chair we use for Jonathan.  It was gifted to us from Team Gleason (teamgleason.org).  Showering a person with ALS is straight up terrifying at times.  Before our roll in shower was built we used a tiny corner shower to shower Jonathan.  We actually preferred the tiny shower because as Jonathan's balance was waining he could lean against any one of the walls for support.  He did fall several times in the small shower and getting him out was an Olympic sport.  Once again, if there are rewinds in heaven... Oscar winning drama/comedy.  

Once the larger shower was built we started showering him in that bathroom, but with wide open spaces you have nothing to catch your fall, and like a friend with ALS once said, you are like a tree trunk going down.  Jonathan cracked the floor tile with his head on one such shower day.  (Scroll fast if open flesh wounds gross you out.)

And so getting a shower chair that Jonathan could sit safely in while we shower him was huge.  Extremely huge.  It was gifted to us from Team Gleason.  It is a NUProdx Shower Chair.  Here's a quick video about the chair:

I cannot begin to describe the good Team Gleason does in the lives of person's living with ALS.  Steve Gleason, former NFL football player for the New Orleans Saints, was diagnosed with ALS in 2011.  Since that time he has paved a road for person's with this disease unlike any other of our contemporaries.  This man's works is absolutely unparalleled.  If you want to do a good thing, donate to Team Gleason.  Don't doubt your donation.  Don't second guess your gift.  The work of Team Gleason is intimately powerful in ministering to the needs of disabled people.  Hats off to you Gleason Family.

#als #teamgleason #nuprodx #showerchair

https://teamgleason.org/

https://www.nuprodx.com/

A Sweet And Tender Find If A Wheelchair Is Your Life

                       

                 

Last week we had a really sweet tender mercy, that for people that live life in a wheelchair, was a blessing to find.  About three hours from home is a town by the name of Sunriver, OR.  We have been there multiple times during the winter but felt the desire to see it during a different season.  We loaded up food for 10 for a week, computers (yes, laptops and chromebooks and the desk top) and school work, 7 bicycles and all things ALS.  It took two vehicles to get there. A friend that stopped by just as we were leaving said he didn’t know a family alive that would go to so much work just to have an adventure, but that is just our groove.  We were super blessed to find that Sunriver has 30 miles of PERFECTLY GROOMED trails that weave in and around forest and rivers to some of the most beautiful places on earth.  I can not describe how good it felt to put everyone on a bicycle and have Jonathan with us every mile.  He has lost the strength to use his hand to sustain forward motion for long in his chair.  BUT we have a special elbow support that we can push his arm forward thus engaging his hand in the "go" position.  When I shove his elbow support way up he is set for MILES (granted you have to chase him down at times to disengage captain go-go bringing him to a stop).  Getting places you would hike and bike to in a power chair can be extremely limited, and Sunriver was a tender touch of heaven in our lives.  If wheelchair life is your life, maybe consider some time in Sunriver.  Jonathan wheeled out of the accessible home we found to stay in and went right into the trails that led to endless hours and days of sweet blessings together as a family.

I wanted to share this opportunity with any that may also benefit from it, but before I close, may I keep it real for my tribe that lives real? After cruising without contention (which is rare) for hours as a family, and me literally thinking to myself, "This is my newest favorite day of my entire life!," we had a hum-zippy of a snafu 100 yards from the door of our rented home.  I saw Jonathan struggling and beginning to panic and I wasn’t able to discern what caused him to go from bliss to utter distress in seconds.  It didn’t take long for me to realize the source of duress.  We spent the next few hours doing a late night bath, clothing change, disassembly of the wheelchair and a thorough scrubbing of the Roho cushion.  For any that have enjoyed a Roho cushion scrub you know the joy of each individual air cushion and how carefully it tucks treasures between every little fingerling. 

                    

 After hours in the bathroom and not all parts of Jonathan’s wardrobe earning a ticket home his eyes caught mine and his silent lips mouthed the words, “Thank you.”  And adorned in odorous rubber gloves and with every ounce of love I had, I smiled back .  Hoping his heart would know I would do it for him a million times over because nothing brings me greater joy.  And for every imperfect mortal morsel that lives inside of me there is an equal amount screaming out, don’t you ever forget- I’m all in.  I’m broken and weak and weary at times, but don’t you ever forget, I’m all in.

                      

Ya.... we tried a bit of that thing called golf - first time for everything. 

Jonathan tried to see if he can still chew gum.  That was a riot!  He was sooooo close to making a wad in his mouth.  It was more of a wallowing around than wadding.  Good times.  Dang tongue just doesn't
git r' done like it used to.

Assets and Liabilities

Walking around the park this morning I was pondering the words of the prophet Ammon in the Book of Mormon as he was rejoicing in the Lord and as he described the challenges that they faced, but also the success they had found.  As I listened to him declare his love for the Lord I asked myself, “Amber, are you an asset or a liability to the Lord?”

That was a loaded question.

As much as I wanted to say, “I’m an asset in the Lord’s battalion!,” my heart was a little more honest. I had that internal shrug and I thought to myself, how I wish I were a little more on the side of asset and and little less of a liability. How easily I succumb to the frailties of man and how often God drags me through life in a manner I’m not proud of.

Another conversation entered my mind from a class I had recently attended.  One of the class members spoke about the experience of a boss and his employee.  Imagine one of your employees made a mistake that caused your business to lose a substantial amount of money- thousands maybe hundreds of thousands of dollars.  Do you fire that employee or do you keep them on your team?  What they have done was an extremely costly mistake for your business, but could losing them cost you more?  Do you take the risk of hiring a new employee with the realization that they may in turn make the same mistake and again cost you substantial loss, OR do you capitalize on what they have learned by way of experience?  Have they now become one of your greatest assets, whose worth is incalculable to the success of your team because of their liability?

With truthful admittance I found myself feeling much like the disappointing employee... but a loving Father reminded me of how great His plan is.  We come to earth to have a hard time.  We come to earth to fail.  We come to earth to gut wrenchingly succumb to our weaknesses over and over and over again.  We come to earth to disappoint people.  We come to earth to be surrounded by darkness that feels like it won’t lift, and temptations that rock our core and we lose.  But God’s plan doesn’t stop at what is lost, He sent a Savior- who’s first miracle ever recorded was a miracle of transformation... that of turning water to wine.  Through His love and infinite atonement, our water- that which oft times feels like a medium of drowning, is changed into wine- a symbol of the miracle of His atoning sacrifice.  It is our liabilities that give us worth because of the power they hold to bear witness of Him.

Joseph Smith was in the grips of a force of darkness just before the heavens opened to him.  Just before being nearly consumed by the darkness, God the Father appeared to him.  Those wrestling moments ushered in the dispensation of the fullness of times when Joseph would become one of God’s greatest assets.  So too must must we have dark moments which in turn become incalculable assets.

So today I am thankful for a merciful plan.  And for the first miracle- 

“So Jesus came again into Cana of Galilee, where he made the water wine.”

May His miracle come again, and again and again to all of us, His hallowed liabilities.

Life Rumblings

Adam and Zach sifted ashes for hours searching for remains in one of the hundreds of homes that burned to the ground in a local wildfire.

Loving the mask Grammy made ❤

Partners in crime, our up and coming suctioning extraordinaire

Five in the bed and you can only imagine what the little one said.

By far the fiercest expression of Jonathan and I’s synergistic gene pool... we are seeing genes we never knew existed.

Frog find after church. 

Presiding Presence

 

The principle of the power of the priesthood to preside in our homes was molded differently in my mind these past few weeks.  

Matthew (ALL too similar to his father) got a bee in his bonnet to build a new rabbit hutch.  The idea had taken root and he was 100% determined to see to it.  All on his own, he found a set of hutch plans, mapped needed supplies, and commenced building.  99% completed, there arose one sticky impasse.  A question regarding tar paper under the shingles.  Unsettled about how to proceed, Matthew came inside to seek the presiding presence of his father.  He knew successful completion would come with the help of his dad.  He sought counsel, a decision was made, and the project seamlessly found itself coming to completion.

 

Not many days after, while tube feeding Jonathan, I listened in on the conversation between he and Adam. Adam was writing out his very first check from his personal checking account.  Asking his Dad who to make it out to, how to write it properly, the amount to make it out for, how to send it in, I realized Jonathan was helping Adam fund his first investment account.  Following his father's counsel, Adam had been reading about investing, worked like a slave to acquire a little nest egg, and was ready to invest his hard work.  Jonathan, using only the subtle movement of his eyes, was coaching his son toward manhood.

And now to pre-teen testosterone, Andrew.  A bit sassy and Corona virus cooped up, Andrew was summoned to practice the piano.  Jonathan was a silent observer to Andrew's pitiful attempt at practicing.  He put his foot down, (mind you with just the motion of his eyes) called Andrew out on his lack of effort, and added additional practice time.  A typical pre-teen snappy brawl began.  Jonathan with nothing but his eyes to hen-peck a message vs. the 11 year old with hair beginning to find its way onto his upper lip.  It got heated, it got ugly, and unruly Andrew found himself grounded for the next week.  Oh, the injustice!  Oh, the howling!  Oh, the pain of being born into the WORST family on earth!  But, with only subtle eye movement, the punishment had been set.  A few days passed and spite turned to recognition of wrong and then acceptance.  While the rest of the family was off playing with friends, Andrew found himself bored at home, which led to baking chocolate chip cookies, keeping watch over his Dad's ventilator, suctioning when needed, and catching a few episodes of "Monk" along side the man in the wheelchair. 

Nearing the end of his week long grounding, Jonathan called Andrew to his computer screen.  He knew Andrew was preparing to complete the cycling merit badge and had 60 and 100 mile rides planned with nothing more than a dilapidated, bicycle shaped chunk of metal to get it done.  Knowing this, Jonathan had picked out a really nice bicycle for Andrew on his computer and simply asked him which color he wanted.  Andrew, shocked that he was getting a new bike, was a bit speechless.  He picked out a color and then was quiet.  He came and sat next to me on the couch and asked, "Mom, why is Dad buying me a bike?"  I explained to him that his Dad loved him.  I said, "Andrew, Dad wants you to become a man.  He knows how badly you want to complete the cycling merit badge and he wants nothing more than to see you be successful.  He wants to give you every tool he can so you can succeed.  That is the same reason he grounded you.  Because he loves you.  He knows the potential that lies within you and he wants you to become the man God intended you to be.  He grounded you, because he loves you.  He bought you a bike, because he loves you.  He wants you to become something more than you already are.  He's giving you the tools to become it."

It was his seemingly simple, mundane interactions with my three sons that bore witness of the power of the priesthood in our lives. This is a man that with almost nothing physically left intact chooses to magnify his priesthood.  A man that bears his witness every single day of the power of a father to preside, even if it looks like nothing more than the subtle movement of his eyes.  This is a man that sacrifices greatly and endures much. This is a man that without complaint does everything in his power to build up the kingdom of God in his very own home.  This is a man that recognizes the calling of father can be magnified regardless of how little it appears one can give.  This is a man that continues to be blessed with a presence to preside.