In the quiet of a Hospital Room

Shortly after Jared was born in 1994, he contracted RSV, a very aggressive respiratory virus known to be fatal to the very young and the very old. Since Jared was only a couple of weeks old at the time, it was very serious stuff. 

It was one of freezing, sub-zero January nights in Hardin, MT.  After some wrangling with the local on-call nurse, De'Etta brought him in to the ER at our little hospital.  The doc met us there and found that Jared really was in dire straits.  He put him on 100% oxygen, gave him some meds, and began watching him very carefully. The doc said Jared would not have survived the night. De'Etta's five-day vigil began. I had the other four kids at home during this time.  As much as I was able, I came by the hospital to check on the two of them. 

It was about day 4 that the medical staff felt he was "out of the woods," but they wanted to keep him there a day or so longer to make sure there was no relapse and that he had completely recovered.  Jared was taken out of the oxygen tent and both he and De'Etta went to a private room. It was about five in the afternoon when I went to the hospital to see how everyone was doing.  The door was closed so I opened it oh, so quietly and carefully.  The light was out and the room was dark.  There was a dim bit of light coming from a floor light, but it was so dim, it took a bit of getting used to it to be able to see by it. 

De'Etta and Jared were both asleep.  I quietly closed the door behind me turning to go to De'Etta's bedside and promptly tripped over the legs of a hospital tray and fell to the floor.  There was a stainless steel bowl on the tray which also fell to the floor with me.  This bowl clanged with all of the vigor of a church bell on Easter morning. I groped for it in the dark to silence it, but I knew both of them would be awake and Jared would be crying.  I was laying on the floor clutching the bowl bracing myself for all of the tumult to come, but it never came.  No crying. De'Etta still slept. The room returned to total quiet. I laid there for a moment being thankful I had not somehow awakened either when suddenly I heard Jared give a barely audible cry. Suddenly, De'Etta flipped on a light, jumped out of bed, stepped over the top of me and went straight to pick up Jared.  She then turned around holding Jared.  As she did so, she suddenly stopped and saw me laying on the floor. "When did you get here?, and what are you doing on the floor?" 

She had slept through me knocking a stainless steel bowl onto a hard tile floor as I fell in the dark.  Jared gives a tiny, little cry, and she is up and moving. Without seeing me laying on the floor, she stepped over me as she was determined to get to Jared. Now, that was some amazing maternal focus.

An Icy Day in Oregon

It's ICY! And cold! School's are closed - but we had an early therapy appointment. 

Rolled down the window and a sheet of ice remained

Michael left for the shower house. I saw him go around the corner. I followed....and BAM...up popped an odd man intent on visiting. It was still dark outside. Have I mentioned the odd things going on since we got here?  I immediately began calling, "Mike, Michael???" and ignored the conversationalist in the shadows.  One of the doors opened and Michael grabbed me in. He had his phone in hand and said he'd been trying to call me to warn me about the man outside the shower house. ::snort::

Freshly showered and laughing, we realized the appointment was 90 minutes later than we expected. Oops.  The appointment went well. We took extra time asking all over the VA clinic for anyone who may have a list of local doctors who will accept United Healthcare/Military West. We had no success. Later at home, I tried to search United Healthcare West instead of Tri-care, and I found pages of providers. I settled on one with a nice female name. She was a CNM which I thought meant a Nurse Practitioner....and then I realized I had chosen a nurse/midwife. 😂 The search continues.

We enjoyed a visit from John and Nadine this afternoon. It's always refreshing to connect with them. John served as Open Bible's Chaplain Endorser during Michael's ministry as an Air Force Chaplain.

Stacia made a few dozen cookies and they turned out GREAT. I made Chicken Divan and it turned out GREAT. I think we've figured out the micro/convection oven. Yay, we will be able to eat in our new motor home. 😋(Blogger says this emoji is a face savoring delicious food - just in case it looks like something else to you too.)

Michael has long suggested I blog stories from before the blog began in  2005. He has encouraged me to capture our earlier years. I've meant to do it - but I've been struggling simply to keep current.  I'm excited Michael is going to begin writing and sharing some of our "pre-blog" stories.

Another Day

Wake up call by a screaming man of some sort at 0445. Odd.

Went to shower and discovered a wide-screen TV had been left under the sink. Also very odd.

THERAPY at 0900 - kids at home doing school with clear instructions for NO ONE to walk alone outside of the RV.

We stopped by my Mom's. She has the cake servers and communion stuff used for all of our weddings. We'll use them for CoRielle. She also had several options for plating cookies - I took photos and sent to Arielle. Mom didn't want to run to Walmart with us, but Lorri did. Lorri and I perfected our crazy cousin routine. We also got the oil changed/filter replaced in Mom G's car, bought a dehumidifier, cut a couple of keys and picked up a few tablecloths.

I may have collapsed and taken a quick nap back at the RV. Watching therapy is exhausting. ::wink::

Michael and the boys worked on the home theater system - mainly trying to hook up wii. It seems the receiver isn't hooked up or something - I don't know. I know the TV plays DVDS and we can hear the sound.....so anyway, Michael is contemplating what to do with the system.

The men went for haircuts. I suppose Stacia and I should make an appointment and get that done too. While they were gone, we cuddled on the couch and watched Gilmore Girls. Yes, we do want to live Stars Hollow. I actually love living in quirky, small towns.

Cooked another dinner.....Michael is fixing the track for the sliding doors between the bunk room and the master bedroom.

And that's a day.

Wedding Clothes and New Tricks

I can tell, until the wedding arrives, each and every day is going to have far too many things planned to actually accomplish! ::snort::

I booked us into an RV park up the highway for our next week. I called around looking for extended stay options. I think I've found a place in January - it's further away from the VA clinic than we want to be, and more money than we wanted to pay, but it's available.

The boys had Japanese tests today....they made 95% and 96%. Yep, I AM proud of them. Japanese is hard.

Stacia, Michael and I visited Mom G across town. Michael brought some things from her home that will make her stay here more comfortable.  We set a spell too.

Next, we headed to Valley River Center and bought Michael some wedding duds. They assure us they will be shipped to my moms in a week. I hope so - the wedding is in 11 days. They didn't have the size suit coat that he needs and recommended we get the pants and jacket together to make sure they match.

Poor Bella appears to have a foot growing from her head

Our final stop of the day (though it wasn't planned to be our final stop) was at BreZaak's. Our visit served three important purposes: 1. We needed to drop off a couple of cruise gifts with them, 2. We haven't seen Izaak yet on this trip and 3. Bella learned a new trick - she crawls FORWARD. We needed to see this new trick of our baby girl.

We got home in time for me to get veggie pot pie in the "oven" and for Michael to proof a paper for Arielle.

We did not make it to my parents. I did not get all the buckeyes dipped and another kind of cookie baked. We did not get any repairs or mods done here at the RV.

Dinner is done and the Veggie Pot Pie turned out PERFECT in the micro/convection. This renews my hope. It would seem I need to ignore the instructions in the manual about cooking time and lower temps and just use normal temps and times.  I may try the wedding Crack Brownies again.

But for tonight we are finally going to do that one thing that means Christmas season is here for us....we're going to watch The Muppet Christmas Carol. "Light the lamp, not the rat!"

SUGAR OVERLOAD

Stacia and I made the centers for 12 dozen Buckeyes....tomorrow we'll dip them all.  

We also tried this Peanut Butter Cup Crack Brownie  recipe....and they are good...but as you can see my micro/convection oven never did BAKE the brownies. Grrr.....The kids still love them and I do think if I remembered to put the aluminum foil down and went and used a REAL oven - these have wedding potential.  I welcome any tips on baking with a micro/convection oven. The biscuits worked - didn't brown but DID bake. The pizza was doughy in the center. The brownies you can see....I have no oven. I need to figure this out.

I had a nice talk with one of the camp hosts. He stopped to see how Stacia and I were doing. I haven't a clue how he knew the guys were gone. He is a retired, disabled, Desert Storm Army vet. The guys are home! They accomplished a lot and brought things up Mom G needs for her unexpected stay in OR. Thank God for families...for the way it is working out that we need to get care in the same town where Michael's sister lives and we can still visit with Mom G. It will make this transition much easier for the kids.

Parkinson's Update

Some have read between the lines and sensed another plot adjustment in our ongoing saga.

Several months ago, the therapists Michael was referred to by the Motion Disorder Clinic in Portland, recommended they see him weekly and/or 2-3x a week. We explained that was impossible. We settled on monthly. Before our cruise the speech/swallowing therapist made clear she felt we were wasting a window of potential in fighting the progression of Michael's Parkinson's symptoms.  We understood, but saw no way out of our situation. We were needed in Crescent City.

I reported Michael's week at the VA last week - 5 appointments in 4 days. It was noted  some muscle tone was taking an unwanted turn. The physical therapist said she would be much happier to see Michael weekly. She feels he would benefit more at this point from more frequent torture in person.

 The  first of two  appointments with the speech therapist this week consisted of her spending 45 minutes explaining to us exactly WHY she felt so strongly Michael should be seen 2 - 3x a week and why she felt we needed to leave CA and stay in OR. He is already aspirating and having trouble with swallowing. This will progress. We can try to control the speed of progression with intensive therapy. If we wait 6 months, a year or two....well pureed food doesn't sound desirable...and once muscle tone or nerve function is lost - it's not replaced. She was very blunt and pointed. She told us we needed to think about MICHAEL and quit putting everyone else's needs first.

She asked, "Why is this decision so hard for you?"

We explained our family world view. We serve. Michael's career was about putting others above self. He does the same as a father, son, and husband - a good one. It's not natural to begin to put yourself first in all decisions.

She finally pulled out the big guns - one several of these VA docs have pulled in the past year. "Chaplain, if someone came into your office and had a degenerative disease, was showing increasing symptoms and had a window to try to slow the progression....but was taking care of his mother...and still had children at home, was fairly young himself and was risking losing function that would not be regained,  what would you advise?"

Blech.

Via Google Images

Michael puts it in river terms. Once the bank erodes, you'll never get the dirt back. By agreeing to this season of intense therapy we are reinforcing the remaining bank.....if we continue to ignore their recommendations, we will continue to watch the bank erode. Michael is too young for us to willingly watch the bank erode without a fight!

We aren't sure how this is all going to work out, but we know we have to make the most of this window. We have to do what the docs have been encouraging. We have to make Michael's health our priority.

What this looks like in December is we're all up here in Oregon. Mom G is staying with Michael's sister.  We are busy with therapy (and  will only get busier), we plan to go visit with Mom G during the days. We have a wedding and Christmas. We're figuring this out as we go.

We have agreed we need to make a season of intensive therapy our priority right now.

We are currently in a county park. We are only allowed to stay here 14 days every 30 days. We are not finding a good spot for an extended stay, but we'll keep looking and we are set up to be able to live on the side of a road if need be for 16 days out of the month.😉  We leave this park on the 10th and are looking at local options.

Settling in to the Season

After church Stacia and I had lunch with my parents, Lorri and CoRielle.  Dad went home, CoRielle went wedding shopping, Stacia and I took Mom and Lorri with us to Target. We had a few more "move in" items to take care of.....I'm looking for a basket/box/crate/something for the front end for shoes. I bought an under the bed storage thing, but I don't like the way it looks and will take it back and keep searching. We also bought a cartload of baking supplies for our upcoming wedding baking.  Christmas decorations and a new comforter set rounded out the shopping. I just can't live with ALL brown.  I think this works with the brown swirly window coverings....

We trimmed our "LIVE (as in rooted) tree,"  played with window clings and hung our little thrift store hats. LOL 

Need to find a candle...left the big front window blank 

THEN, we cuddled up on the couch with popcorn and watched Gilmore Girls until 1:30 a.m. We're done with Season 1.  We aren't overly fond of the "kissing parts," but we are enjoying it so far.  It was fun to be able to watch chick flicks.

Michael and the boys are BUSY down south and will be back tomorrow night.