THE DEVIL MAKES HIM DO IT

Deacon will be 8 in early March.  Should he live that long.

He has been ornery since birth and it continues.  Actually, ornery is not the right word, according to the Webster dictionary.  Mischievous is more like it. 

mis·chie·vous

/ˈmisCHivəs/

adjective

1. (of a person, animal, or their behavior) causing or showing a fondness for causing trouble in a playful way.
   

Before he was two, I remember him saying "I not have it" when he was sitting on his brother's special Lego. 

His curiosity shows in so many ways.  Sometimes he makes a "sandwich" of everything on his plate, names it and then eats it.  For instance au gratin potatoes, chicken and asparagus was dubbed "Wednesday Triple Decker.  And he finished off the entire plate.  The other morning he was in the kitchen, smelling all the spices and herbs.  He invited me to join him and then we would vote yes or no if we should use it in cooking.  We didn't dispose of any because sometimes these taste better when cooked in a dish with other food.

Imagination is also a big suit of his.  For a year or two he had an imaginary friend, Jim.  Jim was a pretty good influence on him.  When I heard Deacon whispering I asked what's up?  He shushed me and said Jim was praying to God.  He sometimes has the habit now of saying "oh, god!".  I told him he should say oh gosh and only use God when he is praying or singing praise.  He immediately started singing "Dear God, thank you so much for inventing Roblox.  I love to play it so much."  His innocent little voice was so precious, I had to put my face in my pillow to minimize my laughing.

His stuffed animals are still some of his best friends.  He often asks me to babysit a few and when he returns, I have to tell him tales of what rascals they were and how I had to put them in time out or down for a nap or some such.  He loves knock knock jokes that make no sense to anyone but him. He always gives them a belly laugh!

He does get himself into trouble (a lot).  He sneaked a bag of miniature marshmallows from his parents' room (shelving in their closet is another pantry).  Ate all of them.  Thanksgiving morning, Dad went to get them to put on his sweet potato casserole right before the drive over to his brother's house.  First he looked in their room.  Then the hall pantry. Then the kitchen cabinets.  He was getting irritated and asked both boys (and Mom) if they had seen the marshmallows.  Everyone said no.  Until Dad asked a more direct question of the boys ... did you EAT the marshmallows.  He then fessed up.

His current fun is balloons.  First he would simply bat them around the house.  Then he would challenge us to play volleyball in the hallway.  He draws faces on them, clothespins them to a t-shirt and wrestles around with him until he pops.  Yesterday he went through quite a few balloons so Mom said no more today.  Of course, he sneaked another and thankfully, when he brought it in to me to blow it up, I asked if he had gotten permission.  NEVER MIND, GRAMMA as he huffed out of my cabin.  Next thing we know, he was in the bathroom trying to fill it with water (use your imagination here) and not only got water everywhere, he caused a leak under the sink from the pressure backing up.  He got to mop it all up and Dad was under the sink for a while fixing things.

Despite behaving like Dennis the Menace, he is the happiest kid.  He wakes up singing.  If his brother gets in trouble for something, he tries to take the blame.  He already takes books into the bathroom and one is a child's Bible.

Maybe there is hope ....

ODD TRADITIONS

Yesterday, Thanksgiving, was my usual tradition.  A GREAT bottle of red and a Stouffer's Turkey microwave meal.  This year I was craving more carbs so I made a box of Stove Top stuffing.  I'll have to toss out the rest because I will be too tempted.

If you haven't tried one, they are remarkably good.  And great portion control!

The family went to Jesse's side of relatives but I'm such a hermit.  Usually they stay for at least 6-7 hours and it is too much for me.  For some reason, they were home in 3 hours.  I barely had time to shower, change my bedding, throw in a load of laundry and empty the dishwasher.  I was also on squirrel alert as one got into the area that has five feeders and managed to chew off the plastic branches the birds rest on.  The neighbors must think I'm nuts!   

We have signed up Braeden for math tutoring and I went to the website to sign up for three sessions a week for all of December.  Then transfer to our e-calendar.  Tedious but necessary and glad it's over.

I had a great day and even had a Duraflame log going.  I heard via email or text from all my siblings and a few friends.  My day was complete!

How was your day?

DEAR GOD

My almost 8 year old was playing a video game snuggled next to me in the Bed of all Beds.  He was disappointed in something and said "oh god"!  I gently reminded him that we should use God's name when we are praying or singing praise.  He promptly sang a little song thanking God for video games and cookies and so on. I had to bury my face in my pillow.  He just kept thinking of things to thank Him for.

I am singing (inside my head) thanks that my older brother is at least maintaining his progress.  And now I am praying for my sister-in-law who just found out two weeks ago she has an aggressive form of breast cancer and after a second biopsy on Monday (positive for cancer) she picked a double mastectomy for December 16.

Friday I had a gynecological visit with a new doctor.  Best medical appointment I have ever had!  I arrived 20 minutes early and they took me in immediately.  Once the preliminaries were over I figured I'd be sitting in my nothingness within a thin paper nightie but NOPE, the 13 year old doctor appeared!  Everything looks fine from the outside and she asked if I wanted a PAP test.  Apparently at 65 I no longer need to have them, unless I want one!  I told her I had stayed up all night studying for it (ha ha) so I might as well have it.  I think I'll stay with the annual exam especially because of the lichen sclerosis.

Mammograms are suggested every other year until age 75, then not at all.  I will continue to have one every year as well.  Best to catch it early, in my mind.

Colonoscopy zoom meeting week after Thanksgiving.  Physical therapy starts week after Thanksgiving.  Dermatologist is scheduled for August.  Ta da!  I am all caught up after Covid.

A HOLIDAY MIRACLE

My brother has come back to life!
 

Last week, unbeknownst to his siblings, he started communicating more with Cheryl and medical team.  He can't speak due to ventilator, but he mouths words, moves his head yes and no.  He can tell time as he had to remind Cheryl to leave and meet a service person!

My next youngest sibling (brother) visited today and was blown away.  Mike was joking and alert and very aware of everything around him.  The medical team has kept him at rehab since he is making progress.  PROGRESS!

Physical therapy has started up again.  The PT's move his limbs and get him sitting twice a day.

This is a total miracle.  

This one is missing my brother Dave, 2 years younger than me.  

Mike is in the sailor's uniform.  I think I am probably 19-20

Unbelievable!  All six of us together.  I was 32, I think.

Brother Jim (4 years younger) missing.  

This was my parents' 50th wedding anniversary.  I was 46.

RELAX, REFLECT, RECHARGE

There are so many bad health issues around me.  I'm glad I have scheduled all of my preventative procedures.

Update on my brother from his wife:

Last week the pulmonary team told me that, based on Mike's slow progress, they don’t expect him to ever come off the vent. I asked Mike if he wants to continue living like he is now and he shook his head no (who would?) 

But, because he has made some progress I want to keep him on the vent until we are sure there will be no more progress. When I asked, the nurse practitioner told me that if a patient hasn’t been weaned in 3 months then the chances of them coming off the vent are very low. Given Mike's age, the damage to his lungs and him being immobile and so sick for almost 5 months … his chances aren’t good. After these discussions they changed his setting to spontaneous with pressure support. This means he breathes in on his own and the then the vent helps give him pressure to breathe out. Being on that was a step forward. 

He did well on it for several days and then the Klebsiella pneumonia (common with people with ventilators) came back on Saturday so he’s back on antibiotics for that, sleeps a lot more and hasn’t been on Spontaneous. He did finally get the brain MRI done last week. It showed no abnormalities except for possible atrophy D/T being sick for so long. They told me that, even if he comes off the vent, he will never be back to his baseline physically. He moves his arms some, but otherwise, he's immobile. I know there are always exceptions so that’s why I want to give him enough time so that we know for sure. 

I wish I had better news. Just wanted to let you know what’s going on. Love you all. 

I hope she is listening to the doctors and medical teams.  It seems time to let him go.  She hasn't texted this past week so I'm not sure if he is still in the rehab facility or whether she got him moved to long term care (nursing home).

My next younger brother called yesterday to let me know his wife has breast cancer and severe panic attacks.  She also had a 15 second seizure which so far has not been diagnosed for cause.  She gets her second biopsy tomorrow and then learn how to proceed.  She has already signed up for counseling.  She just retired this summer.  

Upstairs at the condo, my neighbor has stage 4 esophageal cancer. He has chosen radiation and chemotherapy but survival rate is small.  He's the guy with the crazy girlfriend of 8 years and she talked him into putting her name on the Title to his condo.

Two young friends (with children) have been diagnosed with Covid.

I am paying attention to all of these health issues yet remaining positive.  Tuesday I will start 2x week physical therapy to build up knee strength (so I don't cringe when I see stairs) and over all strength.  Hopefully this will inspire me to exercise another two days a week.

This post is a little late as I have been spending a lot of time creating "thankful" posts each day for Facebook (JB Lockhart) and doing some research for Hunger Fighters.  Did you know that Medicare may be going up 15%?  And our "raise" will probably be 6%?  Those who are surviving with Social Security only just never get a break.  In addition, many households have received child tax benefits (my daughter gets $500/month) which end in December.  Our food pantry is gearing up to serve more families.

I am so thankful Mr. Ralph worked until age 75 so that I reap the benefits of a large monthly deposit.  We also participated in matching funds IRAs and he collected social security payments while working past age 70, which we put into savings/stock market.  

Honestly, I am thankful for so much.

 

VACATIONS (recently) PAST

AND THE BEAT GOES ON ....

I hate Daylight Savings Time.  I have yet to talk with anyone who likes it.  So ... WHY are we continuing to do this??  It's time for me to let the people who are in charge KNOW I want it to stay one time or another.  Don't care which.

It does give me an extra hour this week to try to keep building my relationship with our Tween.  He's mostly moody teenager with just enough little kid left in him.  I'm reading lots on how best to live with this change in him.  As well as learning more about sibling rivalry.

I usually retrieve them both from school and ask open ended questions.  Now I start with Deacon as if his brother is being negative, he doesn't always just copy him.  We continue to support our local food pantry although now I say " we need to gather a donation to drop off .... which day would you like to do that?"

I treated the whole family to a weekend at Cannon Beach for Braeden's birthday (teacher parent online conferences so no school Thursday and Friday). Unfortunately, the family cold finally caught me so I didn't invite them to come to my room to spend the night.

We let him open gifts when THEY were finished eating ... 

that's Dad's burger on the table (I was impressed that he asked his little brother

 to choose which gift to open AND let him help!)

Here's the happy boy we don't see so often any more ....

Here's his normal look .... NOT quite a snarl ....

And my new favorite look ... reading for fun!

GOOD HEALTH is NUMBER ONE

Mr. Ralph had a saying that good health is Number One and everything else is a zero (that follows that single digit).  If you don't have that Number One, you don't have anything.

Remember my brother who went to the hospital on June 27?  He's being "demoted" to long term care (nursing home) as he has not made any progress.

From Sister in Law (on Sat):

Hi, I haven’t updated everyone for a couple weeks because things are about the same. The vent weaning is going very slowly … Mike’s been here at Select Specialty Hospital for 8 weeks. And because it’s going so slowly, insurance is wanting him moved to a LTC facility. It’s all about the money. I’m advocating for him with his case manager to keep him here but at some point insurance will probably win. There are just a few LTC facilities in Mike’s insurance plan that do vent weaning and I have to pick one. 

Surgery refuses to do the diverting colostomy, suggested Mike’s bed sore be covered with a wound vac and that was done on Tuesday. It is a good way to keep the dressing sealed around the wound and keep the stool out. The wound nurse says that, per her measurements, the wound is getting smaller. It looks improved to me too. He still sleeps most of the time. PT and OT work with him a couple times a week. It’s mostly for stretching exercises because he doesn’t really participate in getting stronger. They get him up to the chair twice a day for 2-3 hrs. That’s about it. Wish I had better news. I’ll let you know if there are any significant changes. 😘

I texted back:  (as all of the sibling have been asking each other)

Ah gosh. 😕 Have you talked with his doctors about Mike's prognosis?  

This doesn't sound like much of a life for him. Or you. If they are moving him to less care, what happens when 8 weeks go by and nothing has improved .... where do they send him next? What an awful dilemma. 

Call me if you want to talk. I don't want to stress you out but this has gone on SO long with little improvement 😢

And her response:

Yes, I've talked with the docs about Mike's prognosis. They told me from the beginning, and still tell me, it could take a year to get rid of the MAC. Because of the MAC and being on the vent his lungs are stiff and have some scarring. They say his lungs are like a balloon when you first blow air into it. The balloon is hard to inflate. But if you keep disinflating  and reinflating the balloon, the balloon becomes more pliable and easier to inflate. Mike's lungs need time to heal and do the work on their own which the vent wean allows, they gradually turn down the support the vent gives. 

And you're right, it's certainly no quality of life right now but we have to give his lungs a chance. The docs didn't know if his kidneys would recover and they did to the point that he doesn't need dialysis. He's gone from the ICU to the hospital and then will go to the facility. There's no place to go after that but home. We will cross that bridge when we come to it. 

The docs have no idea if he will be able to ever come off the vent. But we need to stay the course for the months ahead before we will know. 🙏🏻🤞🏻 

Of course I cried a bit. OK, a lot.  And this situation has me talking to those around me about end of life decisions for me.  It also has me doing all the preventative procedures.  Now that the pandemic has let up a bit, I have my mammogram, lady bits exam, colonoscopy, dermatology visit and physical therapy lined up.  I signed up for a diabetes management program but they are totally booked up til summer.  My numbers did go DOWN as I have lost 25 lbs.  If I would just make myself MOVE more, I know I could get rid of that remaining 25 lbs.  Which is why Dr V suggested PT.  I especially need to build strength around my fake knees so that I don't dread stairs.  And work on balance.

I still have the lichen sclerosis which is usually not bothersome.  Last week it was horribly painful so I  used the steroid creme daily for a few days, instead of once a week.  The biggest problem is that it has changed the geography down there which causes my urination to go every which way.  No cure but they offer surgery to fix the landscape ... which I will avoid til the bitter end.  I can't even imagine.