Monday, May 12, 2008

May 7, 2008

May 7, 2008

There have been moments in my life that I have been pretty proud of my intellect...... Hey, I still have the certificates for each report card time thru four years of high school showing I was on honor roll! I have the newspaper article relating my being chosen for a special honors class in college. I mean, really, there has been lots of 'proof' over the years that I do have a brain. Even my maiden name...Brainard! The dictionery states that the suffix -ard means 'lots of what comes before it.' (True it gives the examples of 'drunkard' and 'braggard' but I was a BRAIN-ard!! )

But then there are times that make me wonder if I have any smarts at all! And I think I just encountered the pinnacle of all those times!!! I have spent more time and energy than I want to think about, trying to create a lovely walkway up to my front door. I have weeded, have transported gravel, have coerced my guy into buying me a bunch of brick things. I have raked, ..... you get the idea! Well, the gravel comes with dirt mixed in it. (I suppose there is gravel that is washed clean....but I am sure it is out of my price range.) So even tho I spread that fabric stuff all down the path before putting down the gravel, the dirt made my path a good breeding ground for dandelions etc. I have struggled with them thru the years....gasoline, commercial killers, back breaking weeding.... So when my 'mentor' Jeff L. (the newspaper official gardening expert) said to put newspapers over the weeds to kill them and keep them from growing back....and said they would be biodegradable and in all ways be better than chemicals or the fabric stuff or plastic.... I started saving newspapers. Eventually...just before my stash actually took over the house....the weather indicated that spring had sprung and the time had come for me to spread my papers. There was still snow on the lawn, and that would be a good thing, as the snow would be useful for my project.

Nevermind that I had recently torn a ligament in my knee.... I could do this job straight legged (if not straight faced!)

I carried more newspapers than you can even imagine to the front porch....then hauled as many as I could manage (I think this took me 3 or 4 trips.... or 5 or 6)down the ten front steps and down the sloped path and started covering the largest weeds....they were left over from last fall. Too cold for new ones to grow yet. Now this all took place about 3 weeks ago, yes, my knee was still pretty 'fresh.' But I am stubborn. (When I decided I wanted to build an igloo out of ice blocks one year, my four year old granddaughter ....after more than 100 blocks were packed to the site....asked, 'Why does G'ma say this is fun?') She's grown up and is smarter than to be available now when I get my hairbrained ideas.

Well... I got to thinking about how the wind could blow my papers around, and wondered just what steps Jeff L. would do to secure them. Remember that snow?? I found me a shovel and started throwing snow on them....it would wet them and make them seal right into the dirt and in the meantime weight them down in case the wind blew. (IN CASE the wind blew!!??? This is the hurricane alley of America! )

A couple of days later, mother nature agreed to help me out, and sent two feet of new snow....so my papers were well secured and would be plenty 'pulpy' when the snow melted.....right!! Instead, I watched the sun come back and dry up all the snow and dry up the papers. I knew I was in trouble, but not how MUCH trouble!! A few days ago, while I was in the throes of a doozy of a cold, I observed quite a few papers finding their way on to the lawn, and invading the driveway. Phil and KaCee took pity on me and went out and gathered up the loose ones, and put rocks on the others. And I kept busy with Stan, and forgot about my papers. Today I saw the trees swaying, felt the wind try to blow my hair off my head, and remembered my papers. Oh, oh, oh!!! They were everywhere. I couldn't ask for help!! Phil had been flu-y all night and Stan is 'just hanging around' (his words!) Out I went and started gathering. They were caught in every bush and bramble available, but many had still managed to make their way over the bank and onto a neighbor's property. I knew without a doubt as I struggled to gather them, that this has to be the dumbest idea I've had yet. (But don't despair.... I bet before another 68 years go by, I'll figure out some way to top it!)

I just thought you could all use a good chuckle.....brought to you at the expense of this chuckle head!!! Can't you just see me... hobbling around chasing flying newspapers, hoping no one is watching....while the wind keeps teasing me by getting more to give up their rock holds and join the fun. And just in case that isn't enough fun.... some of the ones I had stuffed in my arms would escape for a rerun!

Remember those bricks Stan bought me? They have been in a pile by the side of the path waiting until I could figure out just where I wanted them. Tonight I decided where I wanted them was securing the newspapers that hadn't taken flying lessons yet. But the wind is blowing so hard out there, that I am afraid of what the morning will show. I may have a few angry neighbors pounding on my door demanding my head! And who could blame them.

Regarding 'hairbrained' ideas....Pete was sure I was having a major one yesterday. I still think it would have worked, but I didn't get a chance to find out.

Stan's doctor insisted she could not treat him over the phone. (I had called 2 or 3 weeks ago when he was having headaches to ask if he could take something stronger than tylenol.) She hadn't seen him since before the stroke, and needed to assess him. So it was up to me to get him to her office. I thought I was calling TransCare plenty early to set up an appt. for them to come transport him, but found they were booked solid for that day. They are the ones who brought him home, so I was a little familiar with them. This is all new and uncharted territory I am trodding each day.

Well, I thought we could put him in the wheelchair and wheel him to the driveway, then lift him out of the chair and into the car with the Hoyer. Someone would have to bring the pickup, too, with the wheel chair and hoyer lift. Then I would use the hoyer to get him out of the car and into the wheel chair... And NOT ONLY would the ride be more comfortable for him, but we could have an outing and maybe get a milkshake from a drive-up. (The original trip home in the wheelchair, in a van, was difficult. He was not able to hold his head up at all back then, and not only did it stay flopped foreward, but his left foot kept slipping off the foot rest. I was buckled in sort of near him, but all I could do was try to keep a package of Depends shoved under his foot to keep it from being hurt. )

Well, I was all set up to have both the car and pickup at home for my use, and a couple of sons, too. Nothing went according to plans. I had neither of my vehicles at my beck and call, but assurance that they would be there. Andy was coming at 11 (I had asked him for noon....appt was for 1:20) because he didn't have much faith in my plan either, and wanted to do a 'dry run.' I figured if his dry run showed I was crazy, I would cancel the appt. and try for a day when TransCare was available.

Pete, however, was convinced I was going to kill Stan, and put in an SOS call to Kathy. Kathy spent her morning calling every transporter company in town....to no avail. Finally, she called TransCare and told them they had brought her friend home, but that the ride was so uncomfortable we had decided to never use them again. Whatever she really said to them...they decided they would squeeze Stan in....and would be at the house at 12:30. I called and told Andy he didn't need to be there until noon.....giving him a little more family time.

He showed up about 11:30 and it is a good thing. Stan has not been dressed for months!! We had to get sweat pants, shirt, and jacket on him. Then we had to get him in Hoyer, into the wheel chair, and down the porch stairs. There are three steps, a landing, and three more steps (to the side yard and driveway....definitely the most expedient route). That was no easy task, even with the help of the van driver. The van ride was the easy part. Andy and I went in the van and kept Stan as comfortable as possible. He didn't complain at all, and rather enjoyed the ride. The road is so bad (Alaska break up!!) that the van driver really went slow. BUT we got there with ten minutes to spare!! His sense of Humor has remained intact, and he was cracking jokes with the driver as he was unloaded from the van.

I was pleasantly surprised by his doctor. I had never met her, and had reasons to wonder...but she was very informative, did not rush us at all, and I never felt like I was taking too much of her time. She answered all my questions, and complied with things that were bothering me. She agreed to take him off coumadin, and also off insulin and put him back on pills for the diabetes. We will be monitoring his sugars carefully to make sure this is okay. She checked his tube and was pleased with what she saw. (Would you believe!! Since he's been home it has been oozing blood around the opening!! AARGH!)

The ride home was harder, mostly because he was tired. As we waited for the van to come for us, he repeatedly told us he was ready to go home and get in bed. He 'felt' every bump on the road home, and decided he didn't want the seat belt on the last couple of miles. It was a real challenge for Andy to keep him from releasing the belt. He was pretty determined, and now when he gets an idea into his head, he can be very stubborn. Luckily, Andy kept him laughing about it.

Pete and Corey met us at home and helped Andy get him back up those steps, while I went in and got his bed ready. So it was not a bad trip really.....blessings on Kathy!! But I would still like to see if he could be put in the car. If so, maybe he could enjoy a ride now and then. Dr. O'Fallon did say she wouldn't require him to come in very often.

He has been asking for a hamburger....very definite about where from and what's on it, too! Andy got him one today, chopped it up very small, put his teeth in, and tried to feed it to him. He really wanted it, but just seemed to choke and cough too much and finally gave up. We'll try again soon.

He expressed his disappointment about missing church tonight. Instead of the regular Bible Study, they had a mother's day banquet so we (I) opted to not have them worry about setting up the phone thing. I was surprised he remembered it was Wednesday!! That is a good sign. Dates seem to be hard for him.


I do have some urgent prayer requests before saying goodnight!

Little Darian King had one leg amputated last week due to the cancer and is undergoing additional surgery for reconstruction. He is just 5 or 6 years old.
Stan's cousin's grandson, Britt Chapman, is almost 12 and just today had some pretty serious surgery on his legs that will force him to be immobile for several months. He has had this type surgery when he was six, and now knows how painful the recovery can be.
Hannah Kingsley is just 3 1/2 and has had more heart surgeries than any of us want to think about. The doctor's want (feel it is necessary) to do an impending surgery asap... between November and March.....but first she needs to stay well AND gain five pounds. She only weighs 27 pounds right now.
Stan's Uncle Don had a stroke Sunday. The report we have had since is that he is doing well.
My sister Flossie just learned she had atrial fibrillation and was put on coumadin. This is what Stan was being treated for....and the coumadin is why he is in the condition he is in now.

Those little ones up there are all so young for such huge problems. Please put them on a permanent prayer list. These are all things that will be a part of them all their lives.

Thank you.....WE KNOW what prayer can accomplish! Stan is living proof!!

Love, M

May Day

God does take care of me...and He helped me keep my sanity today...but I wouldn't say things were shifted around to work in my favor.

Just as I was finishing changing Stan, he had to have a bm. This is a lengthy ordeal at best. After we finished with that and I was once again about to fasten his diaper on him, I heard 'running water' from someplace. As I was the only one home, I couldn't figure this out. Then found out that his left hand had caught his stomach tube (he has no feeling so didn't know) and with all the turning etc
I had to do to change him etc...the apparatus had pulled loose, and his stomach contents were spewing forth all over the other side of the bed and onto the floor. I had a puddle on the floor that measured about 12 by 30 inches...plus a wet sheet, draw sheet, etc. I had to put him in the hoyer and take him off the bed so I could clean it up and then clean up the floor (rug, of course.)

I had plans for Pete to come home and spell me so I could run some important errands (F. Meyers called yesterday to tell me Stan's digatek was recalled and I was to not give him any more, but to bring in his pills to trade for new ones. Also, he is almost out of diapers...will be before bedtime... and a few other things I had hoped to take care of...). Instead of coming at one, Pete called at two
with a 'situation.' The flowers he was delivering fell over in the van and had to be re-arranged and broken ones replaced. The person who loaded the van hadn't secured the 'pegs' that hold them from spilling. He is still taking care of this mess at 4:15... He was to trade the pickup for the car from Phil. Phil will not be able to get him the key until 5:45 because he is in rehearsel and can't be disturbed. (Pete probably won't be done until then anyway.)

I apparently thought I'd have a cup of coffee at some point and turned on the burner to heat water. Who knows how long later that I smelled something and realized what I had done... Hopefully I haven't ruined my kettle...and fortunately, I didn't burn the house down!

Now, just which of these incidents do you think was shifted my way to work in my favor??? heehee

What I need is more days like today.............NOT!!

It is beautiful out! Sunny....warm....

Well... get a good laugh out of this...because it is the only way we will stay sane!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Okay... that is the end of my response to the email. Here is the rest of this 'update.'

I had to cancel my appt. to get a recheck on my knee yesterday due to NO car or sitter available. No matter... after five weeks (FIVE WEEKS!) my knee is finally feeling like it is going to heal, so who needs THAT doctor, anyway!! It still thinks it should ache at night, but I can cautiously go down stairs in a normal fashion today. PTL

I did go 'shopping' today and took care of several errands. After wasting about 20 minutes at Sears hoping to check on mattresses there, I told the guy who paged for me that I would have to forget Sears and go elsewhere. My plan was to check on the temper pedic (sp??) type mattresses at 3 or 4 places before making my purchase. I had called Bailey's and Sadler's, but was going to compare their items with a couple more. I knew their prices and what they had to say via phone about the foam mattresses. The Englander at Bailey's and the Seely's at Sadler's were each $999.99 with a ten year guarantee....and both said those breathed...instead of sweat. The original T. pedic mattress apparently does NOT breathe and does make you sleep hot. Stan has always slept HOT, so I knew I didn't want that. I decided to take a look at the Mattress Ranch for a comparison. Those who live in Alaska know the weird ads that the owner puts on...with his dancing, etc. We met him at the fair last summer...and took pictures with him....Isaac and a friend of mine. (I took the pictures!)

He advertises the best prices...and he was right. I got one for $629 with the ten year guarantee and was told I could let Stan sleep on it for three days and if he didn't like it, I could return it!! If it 'sinks' more than half an inch during the ten years, it will be replaced. The mattress he is on now (came with the hospital bed) dips about six inches where his bottom rests! These foam mattresses are sold with frames that adjust (they tell me they don't call them 'hospital beds.')

Another errand I did today was to return the 'urine control' apparatus to the pharmacy (the one we hadn't opened.) I told Joe I didn't want any money back (he had given me such a deal that there was no way I wanted reimbursed.) He ended up GIVING me two $16 dollar washable under pads that are huge...and will save me lots of 'do-re-mi' over time!! And he sold me a box of 'diapers' for a bargain price, too. What a guy!!

Pete is bringing the mattress home 'as I type.' I am anxious to see how Stan rests with it. It should help me avoid bed sores on him, too!!

Hello again! Pete drove up with the mattress, and he, Mandy, and I made the switcheroo! This means getting Stan in the hoyer and letting him 'hang out' while we change out the mattress, remake the bed, etc. Pete gave Stan the bed controls and he has been lying there playing with them ever since.

Andy promised Stan some Deniki dessert yesterday but Grace took a teaching job and didn't get it made. The first thing Stan said to Andy was 'where is it?' So Andy brought it today and fed him some. It is a chocolate pudding and whipped cream dessert. Ashley helped her mom make it. I think Grace taught today, too. Last week Stan asked for her crazy cake WITH cream cheese frostening. He is getting pretty definite about his wants, huh!!! HIs comment while eating is 'yum, yum, eat 'em up!'

I think that about covers it here.......... So, until next time....

Love, M

The Good, The Bad and The Ugly

Phil. 1:3


I have been wanting to write an update for days. It seems like when I sit down to the computer to write, my mind is so tired, I tend to fall asleep. I don't seem to have much time
or incentive or something to even go to the computer these days. I think it is because 1. I AM tired and 2. It hurts.

I have had a few phone calls and several emails asking how things are.... I really do love knowing you are concerned about us. That is a comforting blessing. I am sorry for not writing
more often....

Okay... the GOOD: Stan has moved his left arm slightly ON COMMAND the past two days!! Brian works it most evenings, and told me his dad moved the arm (shoulder to elbow area)
in towards his side twice at Brian's request. I asked him to do it for me yesterday, and he DID. This could be the beginning of something BIG!!

He has been complaining of pain in that arm and in his left leg lately...so there is some feeling returning!! I used to give him his BIG insulin shots on that side because it didn't hurt as
much. Now he hollars just as loud as the right side!!! PTL (funny thing to PTL over, huh!!)

The weather is absolutely gorgeous.... today I took him out on the deck in the wheelchair to enjoy the sun. I can't wait to play in the dirt!!!

Friends in Kansas sent us a 'ton' of 'diapers' and pads that were left over from their care session. What a blessing! (Dave and Judy Parry, for those who know them.)

Jean Houston and I enjoyed a really fun outing at Kathy and John's....Yummy dinner, super company, and fun evening of playing (and learning) two new games. Pete stayed with his dad.

Stan's headaches have improved and he has quit insisting I get some 'head on' to treat them.

My cousin Brenda and friend Nancy were in Anchorage on Tribal business...and we had a great visit. She also shared that she had torn a knee ligament and told me how the therapy
really was a great help in healing.

Stan is doing his whistling thing right now. It is kind of cute. He started whistling about two weeks ago. I don't remember him ever whistling before.

For a few weeks now the church has been 'piping' in Sunday School class, Wednesday night Bible study, and Sunday's worship service. The two classes are by conference call on
the phone. We can participate in the discussions, hear what others are saying, and really are enjoying being able to 'be' there. We are joined by a couple near Kotzebue and also a
traveling member who just drove thru Canada to Oregon. In fact, he called me for the correct time tonight or I would have missed the class, because I had forgotten what day it was!!
The worship service is by computer web cam...so we actually see and hear the service...and several people make sure to wave to us during the greeting time. That is so neat!! Thank
you all for your super efforts to include us!!

PTL... after being 'dumped' by the clinic from my wonderful doctor's list for several months.... she became available again...and I jumped at the opportunity to get reassigned to her.
Also, called Grace so she could get Katrina back on her list!!! Hallelujah!!

Kathy helped me hook up with Joe at the pharmacy and get the Texas cathetar and another device for Stan. Joe delivered them to me and gave me a very good deal.

We are brought communion each Sunday afternoon...and have wonderful fellowship along with it.


THE BAD: Stan was suffering with some pretty bad headaches last week. He kept insisting that Pete would go to the store and buy some 'Head-On' pain reliever. I tried to tell him I
couldn't just administer anything that wasn't doctor okayed...due to all the meds he is on.

I fell four weeks ago today and 'did something to my knee' as I fell. It twisted wierdly, and I could feel something happen. Since then I have had some pretty intense pain. I can walk...
it doesn't hurt to bear weight on it. I cannot bend it. When it gets bent on accident, the pain is pretty bad. For some reason, it aches (different than the bending pain, but in the
same area) when I lay down....so I haven't had much sleep for the duration. (Now you know why I said I was tired.) I did go to the doctor...but that seems to fall under 'the ugly.'

I have had an ongoing problem with my right ear for maybe 3 or 4 years.... It itches, weeps, gets infected and has pus, hurts like crazy, gets better.... cycles again... and again... and
again. I have had it looked at a few times, but usually by the time I get an appointment, it is better.... I have been given cortizone drops periodically that do help, but it just gets bad
again. It flared up recently while I was also having a bladder owie...so asked the doctor to check it out. She gave me a different kind of antibiotic drops... and the first time I used them,
I got the sensation of being plugged up and for several days felt like I couldn't hear out of the ear...so my doctor sent me to the ent clinic... I was there today, and the doctor vacuumed
out my ear (used a noisy machine that sucked out the 'debris.') Apparently I was so full of infection when I used the drops, they washed a lot of gunk down to the ear drum area...and I
was plugged up!! It wasn't really painful at the time, but the sensation of not hearing on the one side was uncomfortable. It is much better now, but a little weepy and a little itchy. He
gave me some new drops that should clear these things up. I sure hope so. The bladder owie got its last pill today, so hopefully that is okay now, too.

My windows are so dirty... I guess this could be put under all three categories.... I don't have much time or energy...but have decided to wash one a day, or a week, or a month. So far I
have three washed and do they ever look better!!

I haven't been able to really get the Texas cathetar to work yet, and the other device is a 'no go.'

I guess BAD would be the label for our losing the Home Health Care.... It also fits under ugly.... so 'stay tuned.'

Stan needs more attention to exercise... he is not very willing, and the kids do have jobs and family obligations that preclude as much help as needed. I need to work out a better
schedule, so those movements will return!! Andy lifted him up the other day so he actually felt his weight on his leg for the first time since the stroke. (I guess that should have been
under GOOD!)


The UGLY: We no longer have Home Health coming because they say Stan hasn't made the progress medicare expects. He has come so far from where he was three months ago!!
There were doctors who didn't expect him to live, didn't expect him to wake up, didn't expect him to talk.... We have heard of so many cases...even people we know, who sustained
this much injury who are walking, driving, etc...but took any where from two to ten years to get there... yet Stan is expected to gain by leaps and bounds in three months!!

If the OT and PT and speech therapist don't come, then the nurse can't come. So now I have to have him transported to the doctor's office for 'professional' medical observation. (He
can't be treated over the phone.) All I did was call his doctor to ask if there was something besides tylanol that he could take for the headache. I was told since he wasn't being seen
by the nurse anymore, that he needed to be in a nursing home where he could have 'professional' medical care. There were five serious incidents that occurred to him while he was in
St. Elias Speciality Hospital (which is a pretty big step ABOVE any nursing home) so why would I want him to be some place where I would be worried sick over his care!!

More medicare stupidity: I had to purchase the special cushion that makes it more tolerable for him to sit up in a chair. Medicare refused payment because he doesn't have a bed sore!!!
The cushion will help eliminate bed sores ... pressure sores.... !!!

I was told that I should NOT be putting him in the hoyer lift by myself. It is too dangerous. But I am also told that he needs to be up at least 3 times per day!

I took my leg to the doctor I had before getting MY doctor back. He did xrays...even though I was sure NOTHING was broken. The injury happened as I fell..before I hit anything. I felt
the tear or twist as I was falling due to the awkward twist that occurred. Because nothing was broken, I wasn't hurt....is how I felt was the diagnosis. It was two days later when I was
still hurting very badly, before I was even able to get thru to the doctor to see what the xrays showed. I explained to the case manager that I knew I hadn't broken anything, but that
something was terribly wrong with my knee. After insisting this was not arthritis etc...but something NEW and not just a flare up of old age.... she talked to the doctor, called me back
and said he was referring me to the orthopedic clinic. This was Friday...so I had to wait until Monday to talk to them. On Monday I called and found they hadn't received the referral.
Finally, that afternoon, they called back and said they had the referral...and that nothing was broken. Again, I insisted there was something WRONG with my knee. She offered me an
appt. ten days out. I argued, she moved it up to a week, I argued some more, and finally got an appt. in five days! I tried to tell them I wasn't sleeping because of the way it ached
at night. When I saw the ortho doc, I was less than impressed. He told me they don't do MRI's, that the only way I could know just how badly my 'medial collateral ligament' was
torn was to cut me open. I had been told by the Home Health nurses and OT and PT that an MRI was usual and that surgery was usual. Also looking on the internet, I assumed an MRI
would be done. So the doctor told me he would do an MRI if I insisted. I asked him, 'today?' and he said no, it would be about three weeks. He then offered me a brace.... after about
an hour, it came, and he was fitting it on me. It went from ankle to hip...was cumbersome, and painful. It did NOT keep my knee from bending, in fact was designed to allow the knee
to bend.... HELLO! bending it what hurts!!!

So I refused the brace. The first doc told me to ice it....which I did. This ortho doc says, NO ICE...heat! I finally told him that I guess I had wasted his time coming to see him. He looked
kind of startled and said, 'Oh no, this is my job, to answer your questions.' (I had asked him several times how he knew what was torn and how badly it was torn. He never did give me a
good answer...at least not one I could understand.) Anyway, I have an appt. to see him for a follow up on April 30. In the meantime, I had to see MY doctor (the one I got back) last
Friday for another matter, and she wanted to see my knee. She did some feeling around inspection and confirmed it was the medial collateral ligament that was torn, and to be sure to
keep the appt. with the ortho doc. She explained much more to my satisfaction why they don't do surgery or MRI's until about 12 weeks after such an injury. That it is better to keep it up
and let it heal. And then have therapy. So here I am....four weeks into the duration...hoping for some relief in the future. Some 'layman' friend did mention using a pillow, which does help
a little...but not much. The ortho guy did tell me that AFTER this thing gets to feeling better, if there is still pain elsewhere, then they would do an MRI to see if there was more extensive
damage.

Well... I hate to admit the rest of the ugly! Yesterday (Tuesday), I was doing just fine (but am lacking dreadfully in sleep) and had bathed, fed, etc Stan for the morning, had opened the
boxes from Kansas and had stuff spread all over the entry (just outside Stan's room). I had hung the urinal on the back of the wheelchair that sits in the entry, also. So to get to it from
Stan's bedside, I needed to wade thru the packages of diapers and pads that I hadn't picked back up when I decided it was time to change him again. He needed some major cleaning, and I
was so glad that I was able to contain it without soiling the pad under him, the draw sheet, or the bedding. I was still in the midst of this when he announced he needed to pee. I begged
him (foolishly...he hasn't the ability to control this) to please wait while I fetched the urinal. I can't step over things with this bum leg, so my jaunt to the wheel chair was slow and
difficult...and I returned in time to see a fountain spraying all over the bed. I started sobbing! Poor Stan... I couldn't stop. I was just too tired...but had to get him into the lift and off
the bed before I could completely change it. But first I had to get him diapered! I suppose it was a culmination of weeks of no sleep, deep sadness over the loss of our dreams and
previous life, etc...but it took a long time for me to get control. And he felt so guilty... I have tried to tell him it isn't his fault, and I know he couldn't help it.... but I know it really bothers
him.

SO...please pray for us! We have so much to be thankful for, but I fear it won't be the last time I lose IT.

Well.. now you all know why I haven't been writing updates.... who wants to send such depressing news to one's friends!!!

Thank you for caring and praying. Please know it is such a great comfort.

Love, M

Sunday, March 23, 2008

Easter Sunday

Happy Easter!!




Written Saturday morning, March 22:

Allen A Dale (in Robin Hood) sings, 'Life goes on and on...' and so it does. Isn't that wonderful!!

Stan's progress doesn't seem as dramatic to me these days as it did a couple of months ago....but Thursday was a biggie!!
The PT and OT were here working on him (with him) and had him up in his recliner (non reclined). We all noted how straight up he was
staying and how he held his head up (usually it is drooped over to the left). We even noted that once when he put his head down, he i
mmediately lifted it back up. I hated to put him back to bed because he looked so GOOD sitting there. But, the gal who comes twice a week
to bathe him was coming soon and her job doesn't work in the chair. So back to bed we put him....using the Hoyer lift, of course. He is all
squashed up in it, and is always relieved to be free of it when released! We lowered him to the bed and as we removed the loops from the
Hoyer that held his head, he didn't flop back on the bed. Instead, he stayed half sitting with his head up. When he did lie back on the bed,
he would lift his head up more than six inches off the bed!! He did this for us several times. This is a huge FIRST since before the stroke!!
He hasn't continued to lift it quite as far the last two days, but still has much more freedom of movement and does lift it more than two or
three inches up....also something he hadn't done since the stroke.

Maria, the OT, took a 3 day seminar last weekend...something to do with muscle release or relaxation. It is very NON invasive....and another
thing we noted that day....it was first time since he could talk again that he said his neck didn't hurt!!! So, I do have exciting news to share!!!

Another thing that visitors and our kids have noted....his speech is clearer AND not so repetitive. He talked to Uncle Don on the phone this week
for several minutes without repeating words. He still gets a bit fast, but he is using full LONG sentences and telling events very well. I forget that
this is an improvement because I am hearing it everyday.... But it is a big improvement just since he's been home!!

His left leg is doing a lot of 'jerking' that he insists is reflex action....but this is new, and is happening several times a day.....so I am hoping that it is
a good sign. His left hand wants to 'claw' but can be worked or massaged out of it....which we do several times a day. I took the ball away because
I didn't want him throwing it in the house and breaking something....but I am giving it back! He was doing such accurate aiming in the hospital, that it
would be good eye / hand coordination therapy!! I'll just move all the bottles of stuff, pictures, etc to behind him! TADA!!!

The therapists told me on Thursday that they may not be able to continue treating him after mid April because medicare only funds them for 60 day
increments. Stan has to show a marked progress toward a goal for them to be allowed a second 60 day period. The goal is totally unrealistic for a severe
stroke patient...but if we continue to work with him and he continues to progress, they will reassess him in a year and maybe be able to return.

Everyday I learn a little more about the 'rules' that the system demands. Another strange one is the 'pillow.' The PT brought this amazing air pillow....they
are pretty expensive but she has loaned him hers. She checked and found that medicare only pays for one for patients who have bedsores!!! I told her I was
not going to allow Stan to get a bed sore if I could help it!! She is working on getting me a 'deal' for one of the cushions. She said she would bargain for some
kind of a discount!! PTL When he sits on it in his chair he doesn't fuss about getting back into bed. It takes a lot of stress off his buttocks!! I'll have to take
a picture of it....and if I ever get my ability to scan back...I'll send it along for you to see.

Well....while Stan is progressing beautifully....I do believe I am 'regressing' badly!!! My driver's license expired on my birthday, but I didn't notice....so until
it was brought to my attention a couple of weeks later, I was driving illegally! I finally got to the DMV this week to get that corrected. I actually liked the
photo on my expired card, and since it was just taken about a year ago, I had hope to get the sticker for the back of my license. I was told they don't do
that anymore!! Everyone has to come in and have a new picture EACH renewal...and instead of ten years, they are now just good for five years. (Is this
a 9/11 thing???)

Of course, the new picture is not a good one!! Well, from there I went to Costco to renew that membership....and WANTED a new picture. The one on my
Costco card is a 'runaway winner' for the ugliest picture ever taken anywhere!!! But...NO.... no new photo....the card is just updated in the computer after
the fees are paid!! Where is the fairness in this world!!

Well....I was using a 'Stan sitter' so I could get this stuff done, and also was desparate to get to the post office with Easter packages for grandchildren
that live elsewhere. I ran out of time, so had to repeat the challenge the next day...Wednesday. Pete was doing the sitting and needed me home in time
for him to get to church. However, he didn't arrive until 2 p.m. and I didn't get out of the driveway until 2:30....so I was pretty rushed with what I needed to do.

I had to go to the IBEW pension office to prove Stan was still alive and receiving his pension etc. It's an every year thing, only this time HE couldn't go...and
it has to be signed in front of a notary... I had attempted to do this a month ago, but forgot to take the Power of Attorney with me.

I did that, and on my way to the post office I was going right past the Lake Otis Pharmacy so I decided to make a quick stop to check on the status of the
Texas catheter the church is buying for us!! Joe (the pharmacist) had said he would call me with info last Friday, but here it was Wednesday and I hadn't heard
from him. Well.... I hurried into the store, and as I entered I patted my pockets (something I do to check on my car key!!) but my pockets were empty!! As
the realization of what I must have done dawned on me, I uttered (almost under my breath) 'Oh no, Oh no!' A couple standing at the prescription window heard me,
and the man said, 'That doesn't sound very good.' I said I thought I'd locked my key in the car....and I ran out to check. OH YES! I had locked the car with the
key in the ignition AND the car was still running!!

Back in the pharmacy, the gal working there offered to call me a lock smith. Another customer said we should call a cab, because the locksmith charges $80 to
$100 and the cab charges $20 to $25. The couple who first noticed my delemma said he used to be a policeman (NC I think) and they always did it for free. So
the consensus was for me to first call the police for help. The pharmacy gal gave me the phone...she was hesitant to call the police. I was waiting for a phone
number and probably looked pretty stressed, because the lady of the 'first couple' said, 'I'll make the phone call for you.' She took the phone and called the police,
only to be told they can't do that, but that she should call a cab. While she was calling the cab, I had my conversation with Joe, AND asked him if he had a slim jim.
He didn't, but offered to look at the car....only I told him it was okay, that a cab was coming. At some point during the discussion about who to call, someone asked
me if I had another key. I said yes, but that my husband had a bad stroke and so no one was available to bring me the key.

I went outside to wait for the cab driver. Joe told me to wait inside where it was warm, but I was way OVER heated by now and outside felt good. The temperature
thing across the street said it was 29 degrees out!! And, NO, I wasn't wearing a coat....but trust me, I wasn't cold.

When the cab finally got there (about 20 minutes later) I told him that my car was running, too! He commented that that was great, because then he would just
have to touch the window and it would roll down. Later as he was using a wedge to pry the passenger door open a bit and put a wire throught the opening to grab
the door handle....I said, 'Were you just funning me?' He said, 'No, with the engine running there was a way to activate the automatic locks...but my locks are manual!!!'
He did get hold of the door handle, but they won't open even from the inside when locked.... So next he got hold of the window handle and managed to roll it down
an inch or so, got hold of the button...and VOILA! he opened the door. As soon as the door was opened, the lady of the 'first couple' was out the door like a shot,
and telling me that I wasn't paying for this, her husband was!! She told the cab driver to go inside and see the man with the cane, and he would pay him. I didn't
even get a chance to refuse her offer!! I could afford to pay for my own 'stupidity' but she would not allow it. Until then, I had held myself together quite admirably...but
the tears started flowing. I told her (amongst the hugs she was giving) that until she said that, I was 'okay,' but now I couldn't stop crying. What is with me...I
NEVER cry!! This is twice in a week!! The first time was frustration, this time was emotional due to unexpected love. And my angels were NOT done with me yet.
When I got to the post office, I had seven boxes to carry in. I was carefully stacking them on the hood of the car into a configuration that I could get hold of all
in one trip...when I noticed a couple leave the post office and walk past me to their car. We were parked about half a city block from the door...and I didn't want
anyone to feel obligated to help me AGAIN! so I made sure to not make any eye contact. I must have looked pathetic!! heehee I did manage to pick up all the
boxes and proceed to the door in one piece and very proud of my ability....but as I approached the door, I realized it was a 'pull to open' situation. Before I could
even think of a solution, I heard footsteps running, and here was the man from the couple, hurrying to open that door and the one inside the arctic entry, too!!!
Isn't God good to me!!!

I do begin to wonder what I'll do NEXT to require Him to show me how many wonderful people he has out there for me!!

We also received two phone calls this week from persons in the community who LOVE Stan, and had just heard of his stroke. He has had far more reaching
influence than even I knew. I knew that he was more than just a customer to his chiropractor and to his speciality wood store owner....but to hear their
testimony of what he means to them is really wonderful. I was told his chiropractor sat down and bawled when he heard. I was also told by both his office
gal and by the owner of the Hardwood store that they would do anything to help. (Amy said she would come sit with him so I could get out!! Dr. Como's office
said he would treat him anytime for free....etc.) I KNEW he was (IS) a wonderful person, but all the testimonies I've had from people whose lives he has touched
are amazing!!

He WILL walk again!! But we have a lot of work to do to help God with the miracle!! So please keep praying....

Love, M

It is now evening of the same day:

Laura, Sara, and Abigail came to visit....bringing some of her delicious rolls for me (I hinted!!) along with some ham and a beautiful plant. I was able to give
the girls their baskets and see them open them. They are growing into such lovely young ladies!!!

While they were here, Cory brought a beautiful arrangement he had made for an Easter gift to Stan from the church. He came in and visited with Stan
a little and I showed him how pretty my birthday arrangement still is....almost a month old now!! I love his arrangements!! While they were all here I showed
them how I get Stan back in bed from his recliner. (I had put him in the chair after breakfast so I could change his bedding. *By myself* until time to lower him into the chair...then I fetched Phil to help. ''''brag'''')

They were quite impressed with the pillow/cushion until I told them the cost!! Stan was in the chair for over five hours....much longer than any time to
date!!...and with NOT ONE complaint or plea to be back in bed!! That cushion is a miracle!

Brian came this evening to set up the computer for us to 'be at church' in the morning, but couldn't get our computer to comply. So Pete, who is at the
church building right now, as is Alex... is setting up his lap top and will bring it for us to use. Awwwwwwww...modern technology, the good, bad, and frustrating!!

Grace just arrived after taking Andy to work. She brought some of her little yummy cheese cakes...and Stan will be able to eat them, too! She and I are going
to sit him up on the side of the bed. Brian just finished the range of motion exercises with him, so he should be plenty ready to sleep tonight!!!

Phone calls from Nelda and Cheri made this still more a 'red letter' day. And Phil and Kacee doing my shopping was a huge help, even if he did get a HUGE
jar of Miracle Whip instead of a quart!


And so ends (or will in about 3 hours) another day in the life of the Anchorage Knowltons.

Friday, March 14, 2008

Mar 14, 2008

Oh, Oh! I think I wrote a book!!! Sorry!


--------------------------------------------------------------------------------

From: orlaska@hotmail.com
To: orlaska@hotmail.com
Subject: another day in the life of....
Date: Thu, 13 Mar 2008 09:42:29 +0000

I'm back by popular demand

It seems to me that every day is similar to the one before, so I think there's not anything to write about...but that really isn't true.

Yesterday (Tuesday) was a disaster.........I had a major melt down...not something I do, and don't like to admit it... especially since it started in A STORE!!! And lasted almost all the way home. It was just a little thing, but broke this camel's back!! The straw consisted of a clerk charging me about $12 too much because an item double scanned or something. But when I pointed it out, instead of mending the problem, she sent me to customer service.............where there was a line ten people deep! It was HER mistake, but I was being punished!

I think I am a little tired, and it was time to renew Stan's prescriptions. Fortunately, Phil is on spring break so he could stay with Stan while I went to WalMart. I ws trying to be frugle, but have learned that I outsmarted myself! His meds cost almost $300 for co-pay when I brought him home from the hospital at Fred Meyer's...so I thought I'd try Wally's World. Surely that would be cheaper!! After being told..."ten minutes, and I'll call you"...waiting 25 minutes and asking "how much longer?".... being told "they're being bagged up right now, have a seat and I'll call you"..... another fifteen minutes, more asking.... discovering there were meds being filled that I no longer needed, one that he hadn't even been on since before the stroke, etc...getting that all straightened out and feeling pretty good that the final bill would be much lower than last time (since I wasn't even buying nearly as many items)..... finally getting checked out, and being told it would cost $389.00!!! HOW could this be??? A hundred dollars more than last time, but only 2/3 the amount of meds!! I refused the order, went to pay for my other items, and that is where the Customer service came in....with ten people in line!!

Our drive way is a sheet of ice with a touch of melted water on top of it.....so after I backed down ONCE, I wasn't too anxious to try my luck a second time.....SOOOOO... when I realized I had left my glasses in the house, I "determined in my heart" to get home before dark. (My "bad" eye doesn't do well with lights at night without a corrective lens.) That and all the delays at WalMart and knowing I was going to have to "sleep" on my problem all night, spend today (Wednesday) calling the doctor, pharmacy, and insurance company.... I just lost it! Maybe it was the knowledge that I would have no time for a Costco stop and that Polish Dog for dinner that got to me!!

I did make all the calls, got Stan's meds "reordered" this time from Fred's, and even had Andy wanting to pick them up for me so I wouldn't have to slide down our driveway! (I just remembered.... yesterday STARTED with a missing newspaper! That is NO WAY to start the day!)

When I priced the meds so I would know what to tell Andy to expect, I was told the antibiotic for Stan's mastoiditis would cost $296.60. I thought she meant the cost before insurance! She quoted me all the $30s, $7s, etc that I would be paying and kept saying $296.60 for the one. When I told her the last two times I filled that one it was $30 each time. She told me to check with my insurance company. She couldn't do anything about it. Well, I called AARP....and got a royal education! Once Stan used $2500 up, the insurance put him in a new bracket. Until we reach $4050...we were on our own...full price!! Half of his meds full prices are in the one to three hundred plus dollar range. It will only take refilling them one more time to reach that $4050 goal. The good news then is that for the rest of the year, we will just be charged $5.60 or 5% of any med. It will start over again in January.... I am still having "sticker price" shock! But NOW I KNOW why WalMart's price was so high. So, MAYBE WallyWorld was a little cheaper in actual fact!! Oh well....I am now $426 poorer, and know that next time the bill will be full price for all the meds...easily reaching the $1550 amount that will put us back on the "cheap track." Wheeeeee!! I guess the lesson here is: DO NOT GET SERIOUSLY ILL!

I really can't complain, I've had very little to pay for all the time spent in the hospital. His bill at Regional for just the hospital, no doctors, was over a million!! Medicare and AARP have covered almost all of that! Then he had an equal time at St. Elias (only not CCU!) but he did have an MRI, CAT scan, and sonogram while there. And I was told they only charged what medicare pays. The multitude of specialists involved have so far sent bills that say pay 0.00. So I can cope with $1550 one month of each year for meds, I guess. Sure makes me worry about those with no insurance, tho!

I think I am "too close" to Stan to notice the little changes that take place each day. I try to assess any improvement etc, but it takes a visitor that hasn't seen him for a while to exclaim about how good he is doing.

I have found that I can manuever the Hoyer lift by myself, and keep him quite comfortable while doing so. It is much easier to change his sheets, etc. with him OUT of the bed, so I have him "hanging around" while I do the job.

The therapists have had him in the wheel chair (and we wheeled him to the open front door so he could see the snow!). Yesterday (before I went to the store) there were two here together. They had him sitting on the edge of the bed. He can't balance himself when he is trying to, but when we would distract him...like having him pet the cat....he would sit without us holding him up. The plan here is to get those trunk muscles stronger. Remember, he hasn't used them for four months.

Today (Wednesday) the speech therapist and I got him lifted over into his recliner, and he worked with her quite well. Often he is too tired and falls asleep while she is trying to get him to do things. It really is interesting. She brought electrical wire (thought he'd get a kick out of that) that she strung across the room over him. She had wooden beads about the size of a quarter that he had to move with his good hand as far to the left as he could. ...one bead at a time, unless she told him otherwise. He has a tendency to "follow orders" immediately when she tells him something. Except she is trying to slow down the fast speech, and the impulsive movements, so he isn't supposed to DO what she says until she says "START." She had a sock, the tv remote, his glasses, a pencil, and a wash cloth on a lap table and told him to put the wash cloth on his glasses and then the pencil on top of them. He started doing it before she even finished talking. She stopped him and reminded him she hadn't said "start" yet... He stopped and waited and did a great job. It is fascinating the simple little "tricks" she uses to exercise his mind and his sight.

Phil and KaCee ordered pizza delivered last night from Dominoes, and today Grace made homemade pizza and they came in for a visit. She was wonderful working on his range of motion exercises. He dearly loves having Luke and Cannon around.

And so goes our days..... washing, feeding, changing, crushing meds, running the washing machine and dryer and dish washer, and "entertaining" the influx of Home Health personnel that come on a regular basis five days a week. (This is in addition to regular house work. My windows are becoming opaque!!)

Will I ever sew again?? More to the point, will Stan ever walk again?? That is our most important goal that we are striving for. God has blessed us so much, that I certainly am NOT doubting ....

All in all, this should be an encouraging report. He is a good patient....but a noisy one. He makes lots of noises, but they are a joy to my ears after how many weeks of NO sounds coming from him!!!

(Hmmm, did you know if you get your right hand off by one key when typing that "I have..." becomes "U gave..."? Okay, I guess it is more than just the right hand goofing off here...since that g is typed with the left hand!!) (Just a little trivia for your enjoyment and edification.)

I think I was starting to say, "I have received many helpful hints on making Stan more comfortable." when that little "U gave" topic appeared on my screen and got me off the subject! Sorry...

Everything from carrot juice, flax seed oil, Texas cathetars, and memory mattresses! Thank you all.... How can we not succeed when God has provided us with so many loving friends!!! Two of you told me about vegetable oil on the syringe...and VOILA! What a difference....sure makes feeding time much much easier!

We love you all and thank you so much for being there for us...whether it is a helpful idea or an encouraging word.... We FEEL your prayers, believe me!!

Love, M

p.s. Too often lately I am having to "say goodbye" to a loved one....one of the "downsides" to spending so much time in Tulsa. I made many friends, and it seems like one by one, their battles with that horrible disease are coming to an end.

P. P. S. Stan and I were rooting for Lance Mackey to win the Iditarod this year....and HE WON! He is a cancer survivor, and he did the "impossible" last year, by winning the Yukon Quest and the Iditarod back to back. The experts all said it couldn't be done. Then they said it was a fluke! So we thought it would be super if he "showed them" he could do it again. The "fun" part here is, his rival Jeff King had more dogs and a faster team this year and kept right on Lance's heels for a thousand miles. Jeff passed him once, and at least once slept with his feet on Lance's boots so it would wake him if Lance woke and decided to get going. BUT that fateful time in Elim, close to the finish... Lance knew to win he would have to stretch that lead from seven minutes to over an hour somehow. So he had his dogs all attended to and lay down to sleep when Jeff arrived. He lured Jeff into thinking it was safe to take a nap...but as soon as Jeff snored ONCE, Lance was up and on the trail. When Jeff woke half an hour later and still had to get his team harnessed up etc.... Lance was the winner unless something unforeseen happened. It didn't...and Lance once again showed that YOU COULD win the Yukon Quest and the Iditarod in one year. (They are both at least a thousand miles long, and only about ten days apart. ) Okay...I'm going to bed!!!

pps!!! Well, it is now late late Thursday night (3 a.m. Friday). Not sure why this hasn't been sent yet, but I thought I'd add today's activities before sending now. The day started about five, and seven, and .... then at 8 Deryl called about coming for a visit. I had gone back to bed for an hour from seven to eight, still needed a shower and to feed Stan bfst, nurse coming at 11, OT and PT at noon, and Judy (to bathe him) at 2. Kathy was coming at 3 to "whisk me away" for some girl time (and a couple of chores.) So Deryl is coming Friday! He said he had some great news for us, but would not give me a hint!! That, of course, is cruel and unusual punishment....everyone knows I am much too curious to be told to WAIT a full day for NEWS!!

It was a new nurse, and she had a hard time getting his INR taken, but it was a good number...2.0 for those that know these things. I do not like coumadin, and he is still on five mg per day.... The OT and PT worked with him together but didn't get him up this time. I guess I should tell you a "Funny" about their visit on Tuesday. The PT is kind of a "rough" diamond... and used a word (starts with S) that isn't something I like to hear. A few minutes later she used the word "kapish" (sp??) and I said, "Now that is a word Stan understands. I think he got it from my dad, and he often says it. But that S word is one we don't use in our house." I was laughing to hopefully take the "sting" out. It wasn't my intention to hurt her feelings, but I did want her to know it really isn't something to say around us. She took it well, apologized, and I don't think we'll have to hear it any more. I am almost positive it is the only time this house has "heard" the word. Or the cat.... I am pretty sure neither will repeat it!

Judy and I got Stan into the Hoyer lift while we changed the bedding. That thing is a miracle worker!!

Stan's regular doctor's office called to see how I made out this time with the purchase of the meds. The call came from a young man named Draper. When I told him that for some reason neither WalMart or Fred's filled the prescription for Nexium (acid reflux pill), and that I checked on the Protonix we have here .... the AR med he took before the stroke....but it said "DO NOT CRUSH...swallow whole" I was afraid to use it. He has to have it crushed, he cannot swallow a pill. So I asked if it was all right to just not get that one for a few days to see if he had any AR problems. I told him about the "new" cost of meds, and that Nexium costs over $300 for 30 pills. Draper told me they had some samples of Nexium that he would gather up for me!

Kathy came in time for us to get by the doctor's office in time to pick up the Nexium, and to get to the Lake Otis Pharmacy before they closed. There she asked for Joe.... She and he had already "met" over getting certain items to make mine and Stan's daily life much easier. There are a couple of things on the market that make putting in a cathetar unnecessary. Joe had a box (gross...144) of one item that he would sell us for a dollar each instead of the marked five dollar price. BUT... when we got there, he had actually sold them to a "glider plane" pilot that day. He thought Kathy had decided against them for the other item....a $76 clamp. But Kathy and I had discussed the clamp for daytime and the Texas cath for night. The pilot hadn't picked the box up yet, so Joe is going to talk him into just taking half the box and letting me have the rest. When he got his catalog out to order the additional supplies for the Texas Cath (tubes and bags) and I asked "how much" when he asked "how many"...Kathy told me that she was carrying a check from the church to pay for these things. I kept in control, but just barely..... I really don't like to cry, and especially NOT in front of anyone!! But the tears (this time not in frustration, but from love) were really trying to escape.

What "they" probably don't know.... these things will also save us several dollars every month, as they will eliminate the need for so many "Depends" and under pads.... that have cost in the short time Stan has been home around $200....and we brought several of each home from the hospitals. (You should have seen the bag of supplies we got just from his room at Regional before going to St. Elias! Once something was in his room, it couldn't be used for another patient.... but of course, this supply ran out rather quickly....so I got to check out WalMart and Fred's cost.)

We are so blessed.... and please don't worry. Right now we are able to "withstand" the cost. If this had happened a few years earlier, I don't know what we would have done. Our income is stable since Stan was already retired, and medicare actually pays more than our insurance would have. (It doesn't really seem "fair" but they only pay a fraction of the actual bill, and the doctors and hospitals cannot charge more than medicare allows. That is why so many doctors limit their medicare patients. It took me two days of calling to find someone willing to take Mom when she moved in with us. At that time I was VERY frustrated with medicare, but now I am thankful. Thankful, too, the way God DOES take care of us!! (I did find a real jewel for mom....she loved him. A little guy from Poland who went to visit his mother there 3 or 4 times a year...and treated mom like his own mother. I gave him Mom's adjustable cane for his mother when she could no longer use it. He happened to mention he hoped to get off work before the stores closed as he was leaving that night for Poland and wanted to get an adjustable cane!) I can't pronounce or spell his name....but we were certainly blessed to find him.

After our visits to the offices for the pills and "items," Kathy and I had to decide WHERE to eat. Phil was staying with Stan so I could have the evening "out." We indulged ourselves at the Lone Star steak house....and then went home to marvel over yet another gorgeous Alaska sunset!! The view from our house is so wonderful. It is my wish that everyone of you could see at least ONE of them from our windows!! Stan can actually see the sunset from his bed.... isn't that wonderful!!!

Now I am going BACK to bed.... I had just got up to change and adjust him, and decided it would be a good thing to get this sent!

Love (again!), M

Saturday, March 1, 2008

Feb 26, 2008 Madeleine's Birthday!

WOW! It was may birthday....and WHAT A BIRTHDAY! Since I don't feel (or look ) my age, this one didn't count. Right?

It was a rough day for Stan. He was supposed to have two therapists come, and I was wishing I knew how to get hold of them to cancel. His prune juice etc was NOT working, but making him feel miserable with need. I had to listen to his discomfort all day, and it is very sad to not be able to do anything. Finally, about four with Pete and me doing what we could, he had enough success to settle down and enjoy the evening's company. I know that isn't a pleasant subject, but if this is an update and prayer request listing.... this was a bad day for us. (I was expecting several from church to come that evening and wanted the house to be a little more presentable. This is a house that has been neglected for over 3 months of my going to the hospital and now adjusting to a pretty rigorous schedule. Stan, in all his misery, was worried about me trying to clean house on my birthday!! What a guy!!) (The therapists got lost and /or delayed, so when they called to say they'd come later, I did cancel for the day. He was too exhausted for them to work with him.)

Some of the men have a regular Bible study on Tuesday evenings, as do the women, also. They asked if they could come include Stan in the Bible study, and I knew he would love that. The women decided to come and include me in theirs. So it was to be a really nice evening of fellowship and Bible study. Little did I know!!

I was expecting a few to come around 6:30. Andy, Grace, and kids were here and Grace was leaving to take Andy to work when someone announced that people were starting to arrive. I was in the kitchen with Ashley thinking I should have Grace go by Costco for me on her way back. Ashley ran to catch her while I got my debit and Costco cards for her. I started down the stairs hoping to still catch her, when to my surprise the entry was FULL of people, all carrying food and gifts. I think they may have been shouting SURPRISE! They sang Happy Birthday! To this day, I don't think I know for sure who all was here. I took pictures around, but didn't get back downstairs until the end. I thought I saw John Brewer, but he isn't in my photos... Stan said he WAS here. I wonder who else I may have missed. Stan says there were 100 people here, I said about 50, but I think it was really more like 30... and there were those who couldn't come but sent cards! I do wish my scanner and my brain worked together with this computer. I would email you a picture of my cake. It was adorable!!! A very HAPPY cake.
There were veggies and dips, cheese cake, and Dreyers ice cream (the only kind I eat! I know I'm fussy, but why eat a dessert you don't like??? This is my father in law's fault. I didn't use to eat ice cream at all, until he brought home some EXPENSIVE brand once!! I am hooked on Dreyers vanilla! YUM) And Rick E replenished my fresh pineapple supply! I do love it!! The day before, Mandy and Jeff had brought me over an early birthday cake, so I really was well feted this b'day!

The bouquets!! I took their pictures.... they are all so pretty. And the array of other items, all geared to make me feel special. (It worked!!! thank you all so much.)
Stan was very touched by it all, too. He had been mentioning my birthday everytime someone asked him the date. (His therapists do this regularly to check his awareness. As soon as he heard FEBRUARY, he has been saying, "the 26th is my wife's birthday." (Maybe his memory is TOO good!!)

After all the eating and visiting, we did have a Bible study and prayer time. I am so very blessed!!!

It is now Thursday evening, and the days are pretty settled into our busy routine....of Home Health visits, meds, feedings, changing, washing bedding, etc. So help me, if I don't benefit from all these trips up and down stairs by losing some weight...there is NO justice.

Prayer needs (besides asking for prune juice provided relief) are relief for Stan's neck pain and for his left arm and leg to recover and his left side vision (both eyes) to improve. I am told that this phenomena causes him to "think" he is upright, when in reality he is leaning toward the left. He has "blank or black" areas in his vision as the left side of each eye is impaired. A prayer request for me is that I will be able to keep him free from bed sores and infections.

Thank you all so much!!!

May God bless you richly for your continued care and prayers on our behalf!

Love, M

Sunday, February 24, 2008

Feb 24, 2008

Hello again!! I hesitate to write too often now, as each day seems to be a carbon copy of the one before. Well, not really...but I thought there should be something to tell. So, lo and behold, I decided to be the "comic relief" for this update.

First, it is another beautiful day in paradise. Gorgeous blue sky sunshine that makes me want to go dig in the dirt.....except my dirt is still covered with snow and ice.

I really am busy....24/7.... that is quite a "number" but it really is a good picture of my time. So, just in case I have an extra minute or two, I have devised some interesting ways to use them.

First, I caught the vacuum beater bar in a fight with a throw rug....and they both "lost." The rug lost a long piece of yarn, and the vacuum lost its ability to run until the yarn was removed. This was my job....if I wanted to continue cleaning the floors. I used scissors, tweezers, screw drivers, whatever I could get my hands on....and did manage after a LOOOOOOOOOONG time, to make the appliance worthy of its hire again.

Not to be outdone, the dryer thought of something even more fun for me to do. Someone (I can't imagine how this happened!!) washed a disposable diaper and dried it, too. All was well until I went to empty the lint screen. It refused to give up its abundance of loot....I tugged. It held tight. I tugged, and eventually I came up with an EMPTY lint screen.... The dryer thought it had won the tug of war. The lint screen area was so full, I could not pry it loose. I had to find something (turns out the handiest thing that was narrow enough and sturdy enough for the job, was the crank for Stan's bed!!) I used it to pry open (gently, gently so as not to break anything) the area, and while holding it open (about an inch or less) I was able to get my fingers in and pull out the diaper remnants. It only took a dozen or so times of reaching in, readjusting the crank, etc...to finally make the dryer see it My Way....and so also be functionable again.

To give Stan his meds in his stomach tube, there is a syringe that I put the little opened pointed end into the glass of meds and pull them up into container...works just like any syringe. Only this one has a rubber end that seals the container as I pull it up. This rubber or something only lasts about two weeks....more like ONE week. Then it begins to be almost impossible to pull up or to push back down when I put the pointy end into Stan's tube. I, being rather practical or miserly, want to use it until it absolutely won't work any longer. Today was THAT DAY! I was pulling the meds up into the container when the rubber part came loose from the plunger/puller and so as I was pulling with all my might!!!! it now released with a suddenness that caused the glass of meds to explode all over........my jeans and shirt, the curtain and window, the rug, the cabinet, the recliner, the table...and therefore everything on the table including the adorable get well card Luke made Papa..... I not only had a major clean up project, but I had to start over with the meds....meaning dole out the correct doses of ten different meds, crush them up to a powder, mix them with water so they could go thru the syringe and Stan's tube....

The "good" thing was, I had NOT yet given him any of his morning meds, so I didn't have to wonder what and how much of what he had already got. Wheeee! THAT is a big big relief!!

(I did not ....do not.... use or even think a bad word!! Even tho Phil and Isaac might think otherwise!! If you've never heard about my "cussing" incident with them....well, it was like this:
We were leaving Applebee's parking lot one night a couple of years ago. The car ahead of me was taking too long to pull into the street, so I .... who always "reads" license plates...said, "Okay, ESL, let's go." Suddenly Phil is dramatically looking all around. I ask him what he is doing. He says, "I'm looking for the four white horses. When my mother starts cussing, it must be the apocolyse!" I have to "rerun" my thoughts to see what he thought I had said. Apparently, ESL sounded a bit "iffy." Isaac agreed...saying that he wasn't going to comment, just thought maybe I forgot he was in the car. )

So, my clothes have been changed, the rug has been scrubbed with rug cleaner, a towel, some peroxide, and another towel. The table, chair, etc have been wiped clean, but I still have the curtain, window, and window sill to clean. Since they are easily "out of sight, out of mind" I tended to forget until now that I still have some more of my mess to take care of. Ce L'vie!! I have found a few other fun things to do, but they weren't quite as messy as this was. Like forgetting to turn the lever and open the tube when administering meds once, and because the "old" thing was so hard to push sometimes, didn't realize this time was hard to push because it was sealed shut!!! I managed to push hard enough that I "blew the safety cap off" and spewed stuff out unto his bed. I bet I will find something even more entertaining for my next report!!

Katrina and Ashley came with Andy yesterday for a short visit. They spent the day selling hats for Kathy's husband John. It was a beautiful blue sky day for the beginning of the Fur Rhondy (Anchorage's winter time CARNIVAL). But it was still cold enough that the girls' hands got mighty cold. Katrina said it was hard to make change or write, etc. They'll be selling again next Saturday when the Iditarod starts.

Luke and Grace stayed home because that little Varmit has been running a pretty high fever for 3 or 4 days. Tomorrow he comes to the doctor unless he is way better.

Isaac celebrated his cousin Jake's b'day (and his dad's) by going to Hatcher Pass with Jake. I haven't seen him yet to know how he did. Pete did get them for church this morning.

Pete got a job, but now he needs to get a life.............(whee, some moms are never satisfied!!) He is running large equipment for a snow removal outfit. The first night on the job, the foreman had all the other employees come watch him operate the rubber tired back hoe. He's been working 16 to 20 hours a day since he started. I guess they were really behind the eight ball .... He has "built a mountain" of snow where they dump, where before they were just dumping with no "plan" and when they ran out of room, they'd find another lot to dump in. Or something like that. But I am worried about his lack of sleep. He did tell me that he gets to be the one to haul snow downtown for the start of the Iditarod. This always intrigues me.... snow is removed from the streets and then it is put back for the race. I would imagine that after the ceremonious start of the race, the streets have to be once again cleared of snow. Where else but in Alaska!! I still am amazed at the closeness of the "last frontier" and the big city life here. I remember one night going to the post office after work and then driving home... I had to stop for an airplane to cross the street in front of me near the post office, and then on my way up my road to home, I had to stop and wait for a couple of dog sleds to cross in front of me.

Dave M came from church with communion for Stan and me a little while ago. That is always nice. And I got to see Stan through Dave's eyes. Dave hadn't seen him for about 3 weeks, and he marveled when Stan rubbed his eye with his right hand. Dave said it was way better than the last time he saw him use it. So each day does bring improvement, but when I am right there each minute, I tend to not see it. PTL for each added strength.

The OT and I got Stan into the sling and moved him to the recliner by ourselves on Friday, and then Pete and I got him back to bed later.

Today, I had to call Angie for help to pull him up in bed so I could feed him. There were no guys available and when he scoots down in the bed, it bends in the wrong place for him to be sat up. This is a constant problem with anyone who is stuck in bed. That is why his head got hit in the hospital...he was being pulled up!!

Hopefully, any excitement in my future updates will be caused by Stan learning new things, and not by me trying to see what else I can make a mess with!!!

Love, M

Wednesday, February 20, 2008

update day 97

I just got word an hour ago that my sister, Jeanne, passed away. I am blessed to have had so much time to enjoy her even tho she was so ill during the past two years. I have so many fun and funny memories now!! My first visit to Tulsa while we were out walking we found a "critter" upside down. I scooped him right side up and onto the grass and took his picture. We thought he looked a lot like a scorpion only ...no stinger. Turns out it was a crawdad....but NO water near by. She and I were never brave enough to walk down thru the deep grass that went down to a creek behind the Center because we were fearful of the poisonous snakes that can lurk in those Oklahoma places. She told me Lane was braver and did explore that area.

We both enjoyed watching the fish in the clinic....and we were "regulars" at the pharmacy gift shop. I bought teddy bears and she bought fancy cards.

I was always very impressed with all the friends she made there. She was loved by everyone....doctors, nurses, caregivers and patients...and the cleaning crew and kitchen crew, and even the maintenence man was always willing to do her bidding.


Please pray for her husband and children.

Alaska, or at least my little section of it, turned a bit angry today....the wind and rain stormed around us all day long. The snow is now icey lumpy slush, and will be way worse after it freezes tonight. Forty degree weather in February is NOT nice here.

Things are "same-o, same-o" for Stan today. I did some exercises with him that the speech therapist left for me, and he did pretty good with them.

He isn't eating very well, and I don't know what to do. I end up putting a lot of his meals into the tube, but that is not what I want. He used to complain that they are too much work, but now he just gags and throws up, so it is impossible to "encourage" him to eat. I used to just feed him.....while others would let him get away with saying he didn't want something. But when he is gagging, coughing, and vomiting....it is kind of hard to "feed" him.

His left hand, arm, and leg haven't made any huge leaps yet, but let us continue in hope and encouragement!!

Thank you for your prayers!!

Love, M

Tuesday, February 19, 2008

Days 96 & 97

Altogether now!! Take a deep breath, let it out, and say: "I told you so!" (meaning all who told me to "get more rest before Stan came home....." I am so very tired.)

Maybe I'll quit counting the days now..... or just do a weekly update.... each day runs into another. (Listen to me, and it's only been one week.) There is always something going on....like today! Three different Home Health gals came. Nurse at 1:30 overlapped with aide at 2:15 who overlapped with speech therapist at 3. It makes for a busy day and a tiring one for Stan, especially.

Sunday I managed to change him a couple of times by myself...sheets and all....while the others were at church. In the afternoon, Brian, Angie, and Isaac stayed with Stan while I did some needed shopping and mailing. Phil and Pete took part in the church progressive dinner event. (Between Church and the dinner, we all worked together to accomplish a commode session. This was no simple task for anyone, least of all Stan.)
re: the mailing....(The valentine cards are sent, but I still have the last of the Christmas cards to mail. They are the ones that need letters inserted for my "old fashioned NON computer" friends. I still have friends who don't know about Stan because I don't have a letter writing program in this computer and don't seem to sit long enough to hand write them.)

One thing that may come out of all this.... Perhaps we can invent some appliances / furniture etc that will make life easier for others. Pete is insisting he will build a bed that makes turning Stan easier on him and on me. This is a major task and has given me a "permanent" backache. And even when it is two or three of us doing it, he cries out in pain. There has to be an easier, less invasive way!!

Did I tell you that the receptionist at Paul's Body Shop GAVE me her portable food processor? It works great. The first thing we pureed was a piece of taco pizza. Today I did some beef stew and it was like magic!! I have been putting his meds in baby food fruit and then in his tube. They seem to mix better into the fruit than into water and it flows through the tube just fine.

There are so many things I still have to learn. Supplies, for instance. I did find some much better pants and liners....bless WalMart!! I am hoping this will give my washing machine a rest.

Today I had to run to Carr's between the therapist leaving and dinnertime. It takes three of the smaller syringes each day for Stan's insulin, and we only initially bought two packs of ten. WalMart Pharmacy is closed on Sunday, so I failed to get any yesterday. Carrs told me that insurance might pay for them if I have a prescription, so I intend to get one. I have the prescriptions for the two kinds of insulin, so you would think that would mean I need syringes?? right!!

When Stan came home, one of his prescriptions was for a stool softener. Well...what was filled was gel caps that do not smash up, and he cannot swallow them...so as I think I already told you, we returned them and Fred's had to order it in liquid. Well... a tiny bottle that was a one day supply cost over ten dollars. I gave him less and made it last two days...but still a major expense. I asked Carrs if there was anything they had that was the same ingredient. Two of the pharmacists tried to find anything ... including calling other stores for information, but it seemed to "no avail." I got my syringes and went shopping for some groceries. Fortunately, I hadn't left the store yet, because I heard a page for the person requesting for Stan Knowlton please return to the pharmacy. They had found a generic bottle that is 473 ml (he takes 30ml per day) and it only costs $4.93!!! They only had one bottle but are ordering more for me. I truly thanked them for their extra effort to help me.

The wind howled for two nights, the snow is now mostly slush and ice. The Carr's parking lot required either a swim suit or hip waders to maneuver. In fact, I changed my first parking place for another because the water was so deep by my car door.

Pete seems to have inherited my penchant for bloody noses, and is having a terrible time getting his under control. He really hasn't been feeling up to par today after a really bad one.

Stan does love company, and for those of you close enough to come visit, please feel welcome to do so. It might be for your "convenience" to call first. We are "always" here (except for that rare case when I will have to take him to see a doctor....a task I dread and haven't figured out the how of, yet.) The inconvenient thing would be if you came during a Home Health visit....they are either checking his vitals, helping bathe him, doing exercises with him that require his input.... so you might want to miss coming while they are here. Otherwise, just come to the front door, and Stan is all set up right there! Like he says, "I'll be right here."

Everyday I find new things that are changed forever in my life. But at least ONE thing is now okay. While Stan was "sleeping" it seemed I discovered dozens of things I needed to ask, that only HE knew the answer to. At least now, he CAN answer them. And he does....his memory is fantastic. Pete needed an eyeglass repair kit today. He asked me where it would be, and since I don't do the repairs, I had no idea...........or rather, my IDEA was for him to ask his dad. He did...and BINGO! Stan knew. Andy said there were NO switch plate covers in the house (when they were getting the turret room ready for Stan.) I insisted there had to be....Stan piped up and told Andy exactly where to look. Someone still needs to write down his fudge recipe and directions. This is the first Christmas without it since he took over the job of making it more than 40 years ago. Little things... like eating a hot dog in Costco by myself instead of with him....and thinking, "I may never....." can cause an overwhelming sadness. Before he "woke up" I dispared over an outfit that he might never see me wear. Now I need to lose the weight required to wear it, so he CAN see me wear it!! (The ball is in MY court now!!!)

The moral to that last paragraph is: make each moment with your loved one count, as we certainly never know when it will be our last....

On a lighter note.... I am becoming a VERY accomplished and efficient pill crusher, tube feeder, and shot giver! Who says you can't teach an "old dog" new tricks!!!!

As Stan would say..."You're getting silly. Go to bed." So good night all...

Love, M


Every night before bed, think of one thing you're grateful for that you've never been grateful for before. GOD HAS A WAY OF TURNING THINGS AROUND FOR YOU.



"If God is for us, who can be against us?"



(Romans 8:31)

Sunday, February 17, 2008

Day 95

Ahhh! There is always something new to be learned!! The day before Stan came home, I went shopping for supplies...and thought I had what I needed. We did bring home several "diapers" from the hospital supplies. (Once things were opened in his room, they were his.) I looked for something similar, and after much searching, finally found a couple of kinds (I thought). Today was "test" day (because I ran out of the "free" ones).....one package is totally inadequate, and the other that says "adjustable underwear" and shows tape tabs............is a pull up with tabs to make them tighter in the waist. After a couple of mishaps, I cut the pull up ones apart from leg to waist right by the tapes. Using those tapes and some clear post office packing tape... we do fine. I have cut the other ones in half and used them as added protection. I can't believe there aren't things on the shelves!! I will check Walmart soon. Just one more glitch in life!

Our blue sky was only here for a few hours on Friday. It snowed all day Saturday. Our day started with Pete having to pull Phil out of the deep snow in our driveway so he could go to the airport to pick up Kacee. (She was on a music tour with one of her classes to Juneau and Sitka.) Brian spent hours snow blowing the driveway, and Pete went to the valley in the afternoon to help Eric. Andy came on his way to work to set up a shelf and hanger for the TV and VCR/DVD so Stan could see it. He has always enjoyed watching Looney Tunes videos with the grandchildren. His mom would read to our kids when they were little....and always end with "That's All Folks!" I bet she said the same thing to him when he was little!!

Isaac was here to help me, and Phil and Kacee came in the evening and made dinner. After church Sunday Isaac plans to go snowboarding! He is like the kid in the Family Circus funnies in today's paper.... standing in a snowstorm, Billy says, "This is the kind of bad weather that I like!"

Pete has promised to be here with Stan after church so I can go to the Chocolate Factory. I really goofed!! With all the preparations for getting Stan home, and then trying to get settled into a workable schedule, meet with all the Home Health people, etc...I didn't get to the store and post office before Valentine's Day. Not only did I NOT get my grandkids V. Cards sent, but I didn't get a couple of little stuffed animals to a little boy for his birthday like I planned. (The C. Factory has a huge supply of them....!! That's why I'm going there! If I buy a truffle or two, don't be surprised!) I'm hoping that even late, he'll feel special. I need to go to Costco while I'm out, too. Isaac really likes grapefruit...and I can get a huge bag of them there. Pete took my Costco card to get some things there, but they wouldn't let him use it. I guess he didn't look like my picture!! (I really really hope I do NOT, either!! It is a thousand times worse than the worst driver's license picture you've ever seen or heard of!!) Hmmm... he DOES look like Stan...why didn't I think to have him take Stan's card!!!!!

I did get excited over some of Stan's "pain" today. He has started complaining about his left thumb hurting. We hope it means the arm/hand is "waking up." It wasn't until late evening that I remembered that for about three or four weeks after his right arm started "working" that he fussed about his right thumb everytime it was touched. We didn't even notice when he quit fussing about that. Do you think this pain means his left hand is beginning to WORK??? In other words.... your prayers are ONCE AGAIN being answered for him!!! Wow!! I MUST remember to notice whenever specific prayers are answered!!! He is such a miracle man!!

So once again...my specific prayer requests for him are:
the use of his left side, that he'll learn to walk again, and that he can get some sleep at night (so that I can, too!)

Thank you so much for your faithfulness!! Please do remember little Darian, too. He started his chemo...and it is rough!! His grandpa said he actually requested some chicken McNuggets...after several days of not being able to keep anything down!! Grandpa Bob was waiting in line for when bfst was over and McNuggets were being cooked!! That brings tears to my eyes!!

Love, M