March 18th, 2018

Five Years Out

I cannot believe I never posted this video on this site after I made it, back in December 2016 to memorialize the fifth anniversary of Roberto’s passing.

But better late than never.

January 7th, 2018

Roberto on Vizify

I was looking on an old external drive and found Roberto’s old Vizify pages. Thought you’d enjoy checking them out.

November 4th, 2017

Pretending to Listen…

You know how sometimes when you pick up the phone when someone is in the middle of leaving a message and the answering machine just keeps recording? That’s what happened a few years ago when Roberto was in the hospital. He called one Saturday morning to update me on when he might be getting out of the hospital. We had already planned an out of town trip so I was hoping he would be out in time for that.

This message ensued. I shared it with a mutual friend after his death and she, knowing both me and Roberto very well, wisely commented,

If it was important enough for you to say it, it was important enough for him to pretend to listen!

You can literally hear his impatience building as I prattled on about the mismatched kitchen appliances.

March 31st, 2015

Sleep Sweetly

Roberto's and my headstone

February 16th, 2015

A Vacation Visit

Cemetery bench

A nice little bench under a big oak tree provided great shade and privacy at the grave site. Of course, I usually plop down in front of Robo’s headstone and often lie in there, face up, as if willing myself into the grave with him.

September 15th, 2013

Vox Robo

I wanted to share some voice mails that I’d kept over the years from when I was working nights. Right before I retired last September, I made sure I downloaded all the voice mail messages I had in my voice messages folder; most of them were, of course, from Roberto. He called pretty much like clockwork around 10:55 PM each night to place his dinner order. I miss those calls, I miss him checking on me and asking me how my night was going, but most of all I miss coming home to him at night.

And this one, my favorite, from September 13, 2011. He was in the hospital in this one, working on successful transfers after weeks confined to the bed. Being able to go home depended on how well he could move around, transfer, shave and do other things after being in the bed for so long. A good day and an upbeat message!

May 7th, 2013

Happy 65th

This would have been your 65th birthday, dearest Roberto. But you live on in my heart so … let’s have cake. Miss you so much.

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May 6th, 2013

Memorial Butterfly Release

Family and friends gathered on Sunday, May 5, 2013, for a memorial butterfly release in memory of Roberto and what would have been his 65th birthday on Tuesday, May 7. Among those giving presentations were his sister, Linda Herrera Johnson; her husband, Jose; brothers Manuel and Federico; nephew Federico Jr.; and spouse (me), Joni Mueller. Enjoy the video. The butterfly release (24 Monarchs, plus three for individual release by the siblings) is toward the very end.

March 30th, 2013

Butterfly Memorial, May 5, 2013

I am putting together a memorial for Roberto’s 65th birthday and in honor of the fact that his grave marker came in earlier this year. I have invited friends and family to gather at Woodlawn Garden of Memories on Sunday, May 5 at 10:30 a.m. for a remembrance and a butterfly release. I have ordered two dozen Texas mix butterflies from Vibrant Wings, and Roberto’s brother will play some music. Friends and family are welcome to say a few words in remembrance. Afterward, we will have lunch at a nearby restaurant.

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March 25th, 2012

My Hero, 1994

One of my all time favorite photos of Roberto. This was taken at a Big Law party, 1994.

Roberto in 1994

March 19th, 2012

Roberto’s Prayer Card

This is the prayer card provided by Crespo Funeral Home.



December 23rd, 2011

St. Elsewhere

Roberto Herrera

This is one of my favorite photos of Roberto. Even though he’s in the hospital and not home where he belongs, he’s got a big smile on his face and looks healthy. This was Valentine’s Day, 2007.

December 22nd, 2011

Birthday Wishes, 2009

This was a special time since not only was it Roberto’s 61st birthday, but our friend Ivan was visiting us all the way from Belgrade, Serbia. He’s the one who shot the video, in fact.

And more of Fred’s singing on Roberto’s birthday.

December 22nd, 2011

Twenty-Something

Roberto Herrera

Roberto’s sister found some old photos and shared this one with us. This is a photo of Roberto in the mid-1970s. Silly hat! Also in the photo is long-time friend Baldemar Campos (center) and brother Manuel Herrera (right).

December 22nd, 2011

We’ve Come For Your Daughter!

Roberto Herrera

This is one of my favorite old photos of Roberto. The caption should read, “We’ve come for your daughter!”

December 22nd, 2011

Doctor’s Office Redux

Roberto Herrera

Here’s another photo of Robo in the doctor’s office waiting room. I always thought he looked so good in black. And I’ve always loved his dimples.

December 22nd, 2011

Doctor’s Office

Roberto Herrera

I snapped this at the doctor’s office waiting room last year. We loved our outings to “Dr. J”‘s office because afterward we would treat ourselves to lunch at either Prince’s Hamburgers or Taqueria 100%.

May 7th, 2005

Birthday Boy

Today is Robert’s birthday and here are a few photos of but one of his birthday presents, a Sony Vaio FX-250 laptop. It’s not as fast as my Vaio, running 800MHz compared with my 2.6GHz. The hard drive is small, 10GB, but because it is hooked into our wireless home network, he has access to files on my laptop (when it is networked), and the Big Guy (our desktop with two hard drives, one of which is devoted entirely to MP3s). His other present, somewhat visible in the photos below is a Harmon Kardon speaker system complete with subwoofer. Now my boy will have sound too!

We’ve got him set up in the dining room, which we don’t really use for “dining” anyway. I had bought this old piece at auction several years ago for its bookshelf features. Notice the shelves, with sliding glass doors, below. The desktop swings out and up (which is kind of a hindrance). This piece actually did come from England because I remember when I first brought it home and started going over it with Liquid Gold, I found two unused 3 pence postage stamps in a crevice! Note his kewl new ergonomic mouse pad with gel wrist rest. I bought one for me to use at home and one I’m taking to work with me on Monday.

So be warned, he’s armed and considered extremely dangerous! Look out, Internet, here he comes!

Robert's New Laptop, View 1

Robert's New Laptop, View 2

Robert's New Laptop, View 3

May 4th, 2005

Long Overdue Update

Not much to tell, which in itself is GOOD news, I suppose. Robert has been able to stay out of the hospital, free of urinary tract or other infections. He’s been seeing his doctor regularly, trying to maintain his diet and keep his cholesterol down.

We bought a new barbecue grill the other day and both weekends, Robert has fixed a fine feast. Babyback ribs, sausages, a thick T-Bone steak from the butcher, some inexpensive beek ribs, and some chicken wings. Yum!

I bought him an older (800 MHz) Sony Vaio Laptop, it’s not quite as fast as mine (2.6 GHz), but with it he can surf the Net, check his email, login to our home network, and just piddle around. He’s promised to start learning the Internet and upkeep this site and even has expressed an interest in setting up some other sites where he wants to write. Let’s see what happens. Stay tuned!

Our cat, Sunny, is still fat as ever. We lost little Simon, my sweet old Maine Coon, last Thanksgiving. He was getting up in years and it was time. I will miss him so. But Sunny fills the void and has grown closer to both of us.

We still plan to get the Accord converted with hand controls so that Robert can eventually drive again. Right now, we cannot foresee him driving by himself, but it would be nice if we could take turns driving on long road trips. Plus, I know he enjoys driving. Me, I think it is a chore, an ordeal, to be avoided at all costs when possible.

Hopefully the next post you see will be Robert’s!

Comments

Linda L. Johnson
Hey, I just got a look at your very nice setup: your laptop and all the accessories! That’s great! You’ll have lots of fun and will learn a lot with the internet. It is full of wondrous things … lots of junk too, but if you become adept, you’ll have a great time. I like the idea of your maybe writing. I remember you were good at that.
I’m glad you’re doing well, staying clear of UTI’s. I hope you’re birthday was a good one and filled with happiness and peace.
Love, Your Sis

December 19th, 2004

Christmas Visit

We just got back from visiting Roberto’s sister and brother in law for Christmas. They live in the Texas Hill Country. The weather this past weekend was perfect. We couldn’t have asked for prettier weather if we had ordered it out of a catalog! Roberto’s family made me feel very welcome. I know he was overjoyed to be there and will remember his visit very fondly. We took our cat, Sunny, with us and for the most part he was verl well behaved.

November 24th, 2004

Happy Turkey Day!

We’ll be cooking (him: roast pork, roast fresh turkey breast; her: chess pie, mashed potatoes, apple/onion dressing), and eating. And then he’ll be watching football. I’ll probably catch up on some Club paperwork or piddle on the computer.

Have a safe one!!

October 12th, 2004

Perspective

Just sitting here thinking about Christopher Reeve and what he must have gone through being a quadraplegic. I’m sure his death gave Robert some food for thought as well. I know Robert was kind of shocked at the condition Reeve was in toward the end. It seemed like he had deteriorated quite a bit. And Robert can certainly relate to the pressure sore. He had a bad one, one that it took months to treat and cure.

Contemplating what Reeve’s life must have been like, even with substantially more financial resources than WE have. It surely was no picnic in any event. He’s a quadraplegic. He has so much less range of motion than Robert. He could not do anything without assistance.

Contrast that with Robert, who can get in and out of bed by himself, toilet himself fairly well, feed himself, cook for himself and me, feed the cats, reposition himself to minimize the occurrence of pressure sores. When viewed from that perspective, I don’t suppose I can grouse too much. (I certainly cannot speak for Robert here, though!)

I know for a fact that today he was in the computer room playing his Links 2001 Golf Sim. And listening to music. How do I know this? Welll, because all my jazz CDs were out of the CD cartridge and his salsa and blues were in their place. So he was in here, jamming and playing his golf game. Good for him! I’m glad to know he gets up and about when I’m gone.

October 12th, 2004

Christopher Reeve, RIP

The world, especially those affected by paralysis, mourn the death of actor, director and disability advocate, Christopher Reeve, who died on October 10, 2004. He wasn’t just a Superman. He was a super man.

In the first photo, Reeve as a young mn. In the second, as he is best remembered. Then, after the fall. And the final two photos, you can see how his condition has taken its toll.

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Comments

Manuel
Q-Vo folks. Was thinking about you Bro when heard about Superman. I know all his efforts towards the paralysis thing will now come into play with you. Glad to hear you are getting around to messing with the computer. E-mail me sometime. I am sending you a picture of Enrique so be looking for it.
And how about los Stros?! Been wearing the .45s hat you got me way back. Around here nobody, except for die-hard baseball fans know that was the original name of the Astros ball club.
Better get Joni to get your hiney out to vote ABB on election day.
Saludos y abrazos to you and Joni,
Manuel
Linda Lee
Hey, Roberto,
I’m still waiting to read something that you yourself wrote on your web-site. I’m a patient woman, though, so I’ll keep waiting.
The whole world felt the loss of Christopher Reeve and I’m sure you must have felt it more than most. He should, however, be an inspiration to you. He never gave up hope and he kept working at getting better. You can do no less. Nomas no te me “achicopales,” as they say in the novelas mexicanas. In other words, no te ahuites (sp.?).
Did Fred call you? He asked me for your phone number. He’s working in Tennessee, near Memphis. Can you believe it?
Keep the faith, brother. If you have a bible, read the Book of Job. It might help you to understand God’s ways more.
Love, Linda

September 11th, 2004

Hoy!

This is a beautiful song from Gloria Estefan’s Unwrapped album. Lyrics below. En espanol of course!

Tengo marcado en el pecho todo los dias y el tiempo no me dejo estar aqui
Tengo una fe quemadura que va conmigo y me cura desde que te conoci

Tengo un hueya perdida entre tu sobra y la mia que no me deja mentir
Soy una moneda en la fuente tu mi deseo pendiente mis ganas de revivir

Tengo una ma?ana fustrante y una quarela esperando verte pintado de azul
Tengo tu amor y tu suerte y un caminito empinado
Tengo el bardero otro lado
tu eres mi norte y mi sur

Coro:
Hoy voy a verte de nuevo
voy en volverme en tu ropa
sursuramen tu silencio cuando me veas llegar

Hoy voy a verte de nuevo
voy alegrar tu tristesa
vamos hacer una fiesta pa'que este amor cresca mas

Tengo una frase colgada entre mi boca y al muada que me desnuda ante ti
Tengo una playa y un pueblo que me acompa?a de noche cuando no estas junto a mi

Tengo una ma?ana fustrante y una quarela esperando verte pintado de azul
Tengo tu amor y tu suerte y un caminito empinado
Tengo el bardero otro lado
tu eres mi norte y mi sur

Coro 2x:
Hoy voy a verte de nuevo
voy en volverme en tu ropa
sursuramen tu silencio cuando me veas llegar

Hoy voy a verte de nuevo
voy alegrar tu tristesa
vamos hacer una fiesta pa'que este amor cresca mas

Comments

Linda Lee
Absolutely beautiful song! It’s a song that contains some very poetical and lyrical expressions of love. Only in Spanish can you find such expressions. It is truly one of the few languages (besides French and Italian) that can express love or other tender feelings in such a poetical way. I guess that’s why they’re called romance languages.
I hope all is well with the both of you.

August 26th, 2004

Pixture Time!

This is one of my favorite photos of Robert. It was shot about this time in 2002. I hadn’t had the 300ZX very long at that time, and the days were still kind of long. This is near the Houston Ship Channel.

Comments

Linda Lee
This is great! We got back from vacation and hadn’t checked the other website. Roberto has his own domain! It’s way cool! And I’m happy the news is more positive. Thanks to God above (and the new chair, of course.)

August 26th, 2004

A Little of This; a Little of That

Robert has been showing more independence each day. He doesn’t get up and cook dinner every evening, but he gets up and fixes lunch for himself each day. Sometimes, I come home for lunch and we eat together.

This weekend will be our big grocery shopping expedition. That used to be Roberto’s task, one he undertook with relish. He enjoyed getting bargains and he sure knows how to pick delicious, fresh, ripe and juicy fruits of all kinds, peaches, pears, nectarines and especially watermelons.

So this weekend we’re getting our coupons clipped and going down every aisle in search of bargains and that perfect end of summer melon.

He still has problems with neuropath and spasticity, but that comes with the territory. It’s just a matter of figuring out the dosages of medication — and which medications to give — so everything will be on an even keel.

I’m a little sad today myself because it was a year ago this evening when Roberto and I were at the St. Luke’s emergency room trying to find out what was causing his severe side/flank pains. The damn doctor in the ER dismissed my queries about osteomyelitis as being the ravings of a madwoman, dismissed Roberto as just wanting drugs.

Little did the jackass know that less than a month later, Robert would be back in the ER, this time flat on his back and unable to walk. Do I sound bitter? Well, there’s a reason for that.

I’ve told Roberto that I keep this site to update his friends and family. He’s very happy that he has his own domain. I’m going to encourage him to start writing here, instead of me. I think there are probably things he should be sharing with you — or at least things he needs to work through — and what better way than putting pen to paper. Or in cyberspace, keystroke to screen?

Comments

Linda Lee
I hope the shopping trip was fun. You’re like me in that respect, Roberto. I love to go to the market and shop for groceries. Many women I know would rather have a root canal, but I thoroughly enjoy it.
Take care, Linda
Linda Lee
Roberto,
I really think Joni is right and you should do your own writing now that you have this way cool domain of your own. You’re a bright enough guy, probably way smarter than you think, and you would enjoy it.
Love, Linda
PS I’m still on your case with the Man upstairs!
Manuel
Vale mas que no te vayas a fardiar algo en la silla! Jaja!
The grocery store! Since coming back from Oblivia, ahem! I mean Bolivia, I now love going shopping with Mycki. After being down in the 3rd world, I guess being deprived of REAL supermarkets I really appreciate the cleanliness and everything being neatly shelved etc.
On one of my first trips shortly after arriving here in St. Louis, I was sort of forced to go with Mycki to help with Enrique as he was just a little over 3 months old, I remember being in the produce section and what struck me immediately was that everything was real shiny, almost artificial looking, and, there was no smell of rotting stuff as in the open air mercados we had gotten accustomed to. Then a voice came over the PA in that area “Attention please, the produce sprayer will turn on in 30 seconds”. I looked at my watch and sure enough, the mister came on along with the song ‘Singing in the Rain!’ Wow! Only in the USA! I thought I was going to cry. I had not realized all that we’ve been missing while being away from the good ole’ USA. Gotta love this place. I felt like comedian Yuri Yakov when he says “What a country!”
But hey, it’s good to see that you are getting around some and fixing your own stuff to eat.
Well Bro, hope you enjoy getting to go doing some shopping. I do.
Later,
Manuel

August 10th, 2004

Galloping Gourmet

Robert has done a 180-degree turnaround in outlook, spirit and activity level since he’s gotten his new chair. Just tonight, I came home to Robert in the kitchen, putting finishing touches on dinner, which was roast pork, macaroni and cheese and mixed veggies. He had also brewed a pitcher of iced tea.

I was happy to fetch drinks while my guy got our dinner plates ready. Go baby, go!

August 4th, 2004

Freedom Is…

not being confined to your bedroom except on days when you have a doctor’s appointment… It’s being able to go anywhere in the house that you want, to the living room to surf the Net and play your favorite Golf Sim, to the kitchen to grab a snack… even to the front porch to catch some sun.

not having to rely on someone else to be sure you have something to eat and drink at your bedside when you are in the house by yourself… It’s being able to go to the kitchen any time you want and prepare your own meal, to your own liking.

It’s having the run of the house … and the great beyond … just like before!

July 30th, 2004

Hell on Wheels

Robert got his wheelchair the other day, finally. And man, is it nice. Sitting next to the Invacare 9000 rental (list price, $989), the Tilite SX (base price $3095; final bill to insurance company, $8165) looks like a Lexus sitting next to an old Ford Maverick.

And it makes all the difference in the world in his outlook, and that is priceless! Already today, he’s ventured out to the grocery store with the care giver, and insisted on putting most of the groceries away himself.

The rental chair was a completely inappropriate chair for Robert. It is not a chair for a para, the footrests were huge, the chair was way too wide for him (I suspect it was a bariatric chair), and because our old apartment has fairly narow doorways, he was basically confined to the bedroom unless I wheeled him out (sans footrests).

Me and my toes and my cats and their tails better watch out!! Go, Robert!

July 28th, 2004

Fall Down, Go Boom

It finally happened. The physical therapists at TIRR warned it would. They always said, it’s not a matter of if, but when. When you fall.

I was running late getting off work last night and called the house around 6 p.m. When Robert answered, I asked my customary question, “Is everything okay?” He replied that it wasn’t, that he’d fallen out of the bed when he was sitting up with his legs over the side of the bed. I could tell he was upset. He said he felt frustrated and helpless laying there. I asked him why he didn’t call me right away. He said he called Pete (the care taker) and left a message. He knew I’d be home soon.

I told him that I was leaving right away and when I got out of the garage, I called on my cell phone. I decided to talk on the phone while I was driving home. I sensed that my voice had a calming effect on Robert and we talked about some other stuff. Besides, I told him, if I have a wreck while talking on the phone, it will at least serve the purpose of getting your mind off YOUR problems!

We talked about how I might get him up off the floor. We both remembered what we were told (but never shown) at TIRR, and that was to lay the wheelchair on its back, with the seatback on the floor. And to then scoot Robert somehow toward the chair on his back, with his behind (tush?) right up against the seatbottom (which now is perpendicular to the floor). And then once he’s in position, I get behind him and lift the wheelchair and him to an upright position. Robert expressed doubts that either of us would be strong enough to pull this off.

When I was about 8 blocks from home, Robert told me that Pete had arrived. I told him to stay put and explain to Pete our evil plan. With Pete and me there, we should be able to get Robert up.

So when I got home Robert was laying on the floor in a lounging position. He said he was comfortable. (The floor is carpeted, fortunately!) I went ahead and changed the bed linens while I had the chance. Then between me and Pete, and with Robert directing traffic, we got him into position in the chair. But it was harder than we’d thought to actually lift him up. Pete had to pull up with all his might, Robert held onto my arms and I positioned myself between the wheels and pulled Robert toward me while Pete pushed. Four grunts later, we lay exhausted, like bees after stinging, Robert in his chair, Pete on the floor and me in the bed!

Robert felt much better once he was back upright. We ordered take out, and spent the rest of the evening just relaxing.

All’s well that ends well, I guess. And at least he’s got that behind him. But I do want to work on my strength. Pete may not always be around to help us out and we have to figure out how to do these things between the two of us.

Comments

Linda
All’s well that ends well, or so I believe Shakespeare said. Still, it must have been frustrating and demoralizing for Roberto. Good thing he has Pete that can come to help you. It appears to be a very difficult thing to accomplish, getting him back in the chair and getting it upright. Gravity is against you and his weight doesn’t help. There may be a trick to it that TIRR may give you if you ask.
Again, thanks for keeping us posted.
My love to you both. Tell Roberto I’m still on the case.

July 22nd, 2004

Interacting With a Wheelchair User

Here are some tips to avoid awkwardnss when interacting with someone in a wheelchair (from wheelchairnet.org):

  1. It is appropriate to shake hands with a person who has a disability, even if they have limited use of their hands or wear an artificial limb.
  2. Always ask the person who uses a wheelchair if he or she would like assistance before you jump in to help. Your help may not be needed or wanted.
  3. Don’t hang or lean on a person’s wheelchair. A wheelchair is part of his or her own personal or body space, so don’t lean on it, rock it, etc.
  4. Speak directly to the person who uses the wheelchair, not to someone who is nearby as if the wheelchair user did not exist.
  5. If your conversation lasts more than a few minutes, consider sitting down, etc. to get yourself on the same eye-level as the person who uses the wheelchair. It will keep both of you from getting a stiff neck!
  6. Don’t demean or patronize the person who uses a wheelchair by patting him or her on the head.
  7. When giving directions, think abut things like travel distance, location of curbcuts and ramps, weather conditions and physical obstacles that may hinder their travel.
  8. Don’t discourage children from asking questions of a person who uses a wheelchair about their wheelchair. Open communication helps overcome fearful or misleading attitudes.
  9. When a person who uses a wheelchair “transfers” out of the wheelchair to a chair, pew, car, toilet or bed, do not move the wheelchair out of reach. If you think it would be best to move it for some reason ask the person who uses the wheelchair about the best option for them.
  10. It is OK to use expressions like “running along” or “let’s go for a walk” when speaking to person who uses a wheelchair. It is likely they express the idea of moving along in exactly the same way.
  11. People who use wheelchairs have varying capabilities. Some person who use wheelchairs can walk with aid or for short distances. They use wheelchairs because they help them to conserve energy and to move about with greater efficiency.
  12. Don’t classify or think of people who use wheelchairs as “sick.” Wheelchairs are used to help people adapt to or compensate for the mobility impairments that result from many non-contagious impairments. Some of these are, for example, spinal cord injury, stroke, amputation, muscular dystrophy, cerebral palsy, multiple sclerosis, post polio, heart disease, etc.
  13. Check your assumptions! Don’t assume that using a wheelchair is a tragedy. Wheelchairs when they are sell fitted and well chosen are actually a means of freedom that allows the user to move about independently and fully engage in life.
  14. Don’t pet guide dogs or other service animals…they are working.

Other Links

July 4th, 2004

Getting Out of the House

On June 23, my employer sponsored a Family Fun Night at Minutemaid Stadium, where we were special guests and got to watch the Astros not win over the Pittsburgh Pirates. (Oh well!) We feasted on catered “ballpark” fare, juicy hamburgers with all the trimmings, succulent hot dogs, cookies, ice cream, fruit salad, veggie quesadillas, beer, wine, and soft drinks. Even though it was pouring down rain that night, we had been looking forward to this night for quite some time. We had a blast despite the weather. (After all, it wasn’t raining inside the stadium!) Here’s a photo I snapped of Robert enjoying a hot dog and engaged in conversation with a mutual friend.

Comments

Memo
manusons@nullearthlink.net
Cool! 4th. at the ballpark! Doesn’t get better than that during the 4th. It was rain here also. We WERE going to do the Fair Saint Louis, the yearly thing during the 4th here but it was a no go cause of the rain. But it was just as well as I had a brisket going and it came out mmmmmmm delicious! Could cut with a fork. Later guys.
Linda
jolnjj@nullgvtc.com
I don’t remember if I posted the message I composed before I went birdwalking into this great website, so her it goes again.

It is wonderful to see Roberto’s picture when you went to Minuteman Stadium. He looks well and, I must say it, even if he’s my brother, he looks very handsome.

I must confess I haven’t been checking out the site for several weeks. I am recovering from surgery to my shoulder and working on the keyboard and using the mouse is painful, still. PT is helping some but I still have a ways to go.

Love to Roberto and best regards to you. Tell him I’m still praying for a miracle or two: that he will believe and that he will be cured. If he keeps himself open to the possibility of the former, he might come to realize the latter.

Love, Linda

July 4th, 2004

July Update

Robert is doing fairly well. He has managed not to have any UTIs since that really bad one he had in mid-April, right after he got home. So far, so good! His appetite is back to normal (eat everything in site!). He’s keeping his blood sugar under control (which helps with no run-away urine output, which in turn helps keep UTIs at bay), and his doctor was surprised that his cholesteral is low!

We are still waiting on the new wheelchair. The Tilite representative from APRIA Home Health Care is coming out next Wednesday to counsel with Robert and measure for the new chair. Suffice to say it will probably cost at least as much as our Honda Accord!

June 19th, 2004

Wheelies

We picked up the prescription for Roberto’s chair FINALLY today. Monday, I’ll fax it to the home health care peeps who will be calling to schedule a time to come to the house to measure Robert for this chair. I always thought a wheelchair is a wheelchair is a wheelchair.

Not so! There are different chairs for different people and different disabilities or physical limitations. The chair a geriatric would use is different from the chair someone like Robert would use.

I’m not sure which model he’s getting, but it will definitely be a Ti-Lite. They are light, made of titanium, flexible, absorb shock better than rigid chairs, and what’s most important to Robert in our small apartment: It turns on a dime. And it costs about as much as my Accord!

May 26th, 2004

Project Walk

I was over at SpinalCord.org and found ProjectWalk. I’ve never been so encouraged by the videos I watched of the progress some of these people have made. It was very heartwarming to say the least.

I’d love to get Robert into this program or one like it. Insurance won’t pay for this, natch. And the price is prohibitively expensive for us (around $3-4 grand per month, plus it’s in Sandy-Eggo. Only half a continent away. Errch!)

But after looking at those videos, which were very informative and went so far as to mention what kind of equipment was being used and which muscles it exercises, I don’t think there’s anything this place can do that we can’t figure out a way to do right here in Houston. One piece of equipment in particular, called a Versaclimber, I don’t recall seeing at T.I.R.R.

Gold’s Gym, here we come!

April 25th, 2004

Birthday…

I just hope Robert doesn’t have to celebrate his birthday in the hospital and that we have good news by that time. That would be a nice present.

Comments

Memo
Hello Bro,
Que pasa?
Hope that another abscess is not forming and hope you heal from the infection quickly. Si no es una cosa es otra, right?
Hope you guys don’t think I was blowing off checking on you as it’s been some time since I posted anything on here but I’d been out of cyberspace as my other computer crapped out on me and I got a new Dell Dimension 2400 just this past week and I love it. I’d been out of the loop for over a month.
Mycki has been down in SA since the first week of April helping her dad and I was going to drive down the first week of May as her sis in law is getting her master degree in computer science May 8 and wanted her to be there. I was planning on swinging by Houston on the return, BUT, Enrique broke his arm last night playing Spider Man before going to bed so it was off to the ER for him in his pajamas. So now they are coming back tomorrow in the am. 2 weeks in ET’s condition was a little too much.
Will try later in the summer when ET’s cast is off and he finishes pre-kinder summer school. Maybe by then we can work a sort of vacation and not be so much in a hurry and spend a few days in Houston.
Bueno Bro, I hope you heal quickly and hang in there.

Hablamos despues.

April 25th, 2004

So Much to Tell

Robert was only home two weeks before he had to go to the Emergency Room (Friday, April 23). He had a bad bladder infection and the damned doctor in the ER was going to send him home with some antibiotics had I not put my foot down about admitting him.

Why did I do this? You should have seen the way he was behaving. He was definitely not himself. He was in and out, very fuzzy. You know the old saying about “This is your brain on drugs”? (A fried egg.) Robert’s brain would have been oatmeal. I have known him a long time, a lot longer than that punk in the ER (I hate to sound disrespectfully, but the guy didn’t know squat about what was going on right in front of him!). And when I say he’s “not right,” you best believe he’s not right. I couldn’t have him back home in the state of mind he was in. I have to sleep some time. What if something happened during that period of time? At least in the hospital, he can be monitored!

So finally, after I explained that to him (for the Nth time), he consented to admit Robert. That was only after we’d both sat around the ER the whole day. We got there at 9:45 in the morning, they were making noises about discharging him at 2:30; I pitched my fit, and papers were written to admit around 3:00. Finally, around 5:00, he got a bed. I stayed overnight Friday night and he seemed to improve. He had dinner and a snack. Finally got some meds down him.

Saturday afternoon, I went home to do laundry and housework and was planning to come up in the evening and stay overnight, but it started raining really hard. I talked to Robert on the phone around 6:30 p.m. and he said he’d just come back from having an MRI and was having dinner. I told him to call me when he finished eating.

When he called back, he told me he said he would know the results of the MRI the next day (today, Sunday). At that time, it was pouring down rain and he said stay home tonight. So my plan is to head over there this afternoon around 4PM and stay overnight and just go to the office from the hospital.

When I spoke to him this morning, he told me that they thought he might have ANOTHER spinal abscess. They aren’t sure if it’s the same place, but they are talking about more surgery. (Mind you, the jerk in the ER was going to just send him home! Kinda makes you lose faith in some of these people walking around calling themselves “doctor”, eh?)

I’ll post more as soon as I know anything. His bedside telephone number is 832/355-3495.

April 11th, 2004

Homecoming King (and Queen)

Thursday was a hectic day. Not only was it the last day at my desk at work, but I had a Z Club of Houston meeting that I couldn’t get out of. After that, I raced over to Heartland to pick up Roberto for his ride home, a moment I’d been eagerly awaiting.

We got home okay, got him settled into the bed. Amazingly, he slept like a baby his first night home, partly because the air mattress that came with the bed cushioned him.

He was sent home with tons of pills and we have our schedule set up for taking them. I also have a schedule for mealtimes, checking/changing the cath bag (urine), and checking for stool. (A glamorous job, that one!)

So far, things have been going like clockwork. The temporary wheelchair the insurance company had delivered is a bit wider than the Quickie IIs that we were used to at TIRR. So it’s a bit harder to navigate them in the fairly narrow hallways of our apartment. But we did have an outing yesterday (Saturday). We went to Walgreen’s to fill a prescription for insulin and then went “joy riding” around the neighborhood that Robert hadn’t seen since last September, almost seven months ago.

Today, Easter Sunday, we’ve just finished lunch, he’s had a small snack, has been up in his wheelchair for a few hours and is now back in the bed watching sports.

Part of his routine is getting up and sitting in his chair for several hours in the morning and several hours in the evening. Getting in and out of the wheelchair to the car is considered by both me and him as a workout. I don’t know if the physical therapist would agree, though!

Will write more next week. Happy Easter, everyone.

April 8th, 2004

Un Mas Dia

And one more night of being alone in the house. Robert’s durable medical equipment arrived today:

  1. Hospital bed with motorized head and foot, and an Invacare MicroAir 3500S low pressure mattress to prevent pressure wounds.
  2. Wheelchair with roho (not rojo!) cushion.

I’ve got the sheet (twin) on the bed, his pillows (including the two brand new $79-each pillows I extorted from the furniture company when they messed up the order on my new mattress/box springs last November), his sheet and a nice chenille bedspread. If you ignore the gleaming silver side rails and the hissing of the air mattress, it’s just like home!

After my Z Club of Houston meeting tomorrow night (I have to be there; I’m a board member), I race over to Heartland (ETA 9:30 p.m.) to get Robert and bring him home! Yay!

March 28th, 2004

Two Weeks

Good Friday will be a very good Friday indeed. Robert is coming home!! Woot! Yay! Yippee!!

He’s excited about that, but a little apprehensive as this is all uncharted waters for him. Still, it will be nice to be home, back in his own surroundings! With his cat!

Speaking of the cat, today was Pet Day at Heartland, so I toted Sunny (all 25 pounds of him) in his Sherpa carrier to see his “daddy.” I snapped a couple of pictures of them together, but had to leave the Mavica with Robert since he needs to show the physical therapist our bathroom setup.

Two weeks and counting down!

March 22nd, 2004

Weekend Update

Only thing is, I’m not Dennis Miller!

Because Heartland is so far, and because I had a few things to do this weekend (a couple of which were kinda of unexpected), I didn’t get to spend that much time with Robert. But both times, I came bearing takeout supper treats. And the day’s newspaper.

The room is small, and in a way, this is nice, because I can move my chair very close to his bed, parallel to it. At one point, I was kind of laying (keeled over, if you will) on the bed. at least my head was. It’s nice to be close enough to put your head down next to someone. Rather than having to talk to them from a chair, a distance away.

The man in the next bed seems fairly quiet. Robert said that there was an issue with the telephone right away. On Friday, the man’s son was visiting. He apparently saw that the phone was in the middle, but on Robert’s tray table. He then (without saying anything to Robert) moved the phone from between the two men to a place across the room, where basically neither of them could get to it.

A line from the movie, “Ferris Bueller’s Day Off” immediately came to mind:
What a little a$$hole.

That’s when we decided that it was time that I took Robert’s cell phone to him so we could communicate that way. I also brought him his 13-inch RCA so he could have it right by his bed and not have to share with the man (or his evil son). Some people’s children, is all I can say. There’s one phone, so it seems obvious it needs to be shared, not hoarded. But at least that problem’s solved. Ironically, the man didn’t receive one single call on that phone until today (Sunday).

Also, while Robert and I were visiting, we heard a bit of a ruckus when the man came back into the room from wherever it was he had been. I could have sworn at one point that I heard him fall. But then I heard regular movement again (or so I thought). Robert and I exchanged puzzled looks.

Then I heard the man say, “Ring the emergency bell!” I jumped up and pulled our curtain back to see the man on the floor, with his wheelchair basically on top of him. I pulled it up, and hollered out the door (bellowed, actually), “Nurse, Nurse! Room 2207, stat!!” I had to holler this several times before someone finally appeared.

When I saw the staff had things under control, I went back and sat down. They got the man settled back into bed, chastising him for attempting such a daring feat as trying to reach something on a shelf from his wheelchair, and then left. At least the man wasn’t hurt. (The reason he’s there at all is because he had a stroke and a heart attack.) He was trying to reach something on a shelf and that’s when he lost his balance and fell forward out of the chair.

Something kind of amusing happened today with the cell phone. Robert called me early this morning. I was dead asleep and my cell phone was in my purse. It took me a minute to shake the sleep off, stumble into the dining room, locate my purse and dig the phone out. By that time, he’d hung up. I tried calling back right away, but the phone went immediately to voice mail. I knew that meant Robert pressed the wrong button and instead of just hanging up, he turned the phone off.

I tried calling back a few times to see if he’d realized what he’d done. At one point, I misdialed the exchange and got some woman’s voice mail. I went ahead and left her a message that I had misdialed. If she’s like me, she’d wonder about the strange number. I thought my message would ease her mind.

Later that day, while I was at the computer, my cell phone rang. I glanced down and noticed the last four digits of the phone number. I recognized them as Robert’s. I picked up the phone and answered the way I usually would if Robert were on the phone:

Hi, Pretty!

(I’m sure he hates this nickname!) A confused woman responded and I explained to her who I thought it was, not noticing the exchange. She laughed and said “What a great way to be greeted!” We exchanged a few pleasantries and hung up. Robert and I laughed about it later. I bet the woman was confused when I answered the phone, “Hi, Pretty!” And Robert said, “Yeah, especially if she’s really ugly!”

I probably won’t get back to see him until Tuesday or Wednesday. We are lobbying for a private room. Let’s see what happens.

Medically, he’s doing okay. Nothing happens on the weekends there. No PT, no OT, no doctor visit. Tomorrow, the doctor will make her rounds and do her assessment. She hopefully will also be able to make a projection as to exactly how long he’ll have to stay there. He does need some practice again on the transfer board as he hasn’t gotten himself in or out of bed in over a month now due to his illnesses. He also needs to practice catheterizing himself with the reusable cath kits, not the disposable (and very expensive) ones they provided him at TIRR. (The insurance company won’t pay for those for home use.) He also needs to get up to speed with his bowel program. Hopefully all this can be accomplished in the next several weeks.

I’ll update again later this week.

March 19th, 2004

Home Is Where the Heart(land) Is

Robert got to Heartland after lunch today. He was kind of disappointed to be sharing a room with someone. A grumpy old man who flirted shamelessly with the nurses but who, wisely, did not attempt to strike up a convo with Robert.

As long as Robert has been in the hospital, he has been isolated (i.e., been in a room by himself). We are not sure why this is, but because we love our privacy, we don’t question it. I get to stay over. I can come in later than normal “visiting hours” end usually around 9PM.

All those things are hard to do with a room-mate to consider. Plus, they have to share a TV. It’s a sure bet this GOM (Grumpy Old Man) won’t share the same viewing preferences as Robert. Well, all I can say is, “Life’s rough, ain’t it?!”

Kidding aside, he will need to concentrate on building up his strength and stamina, not laying about watching TV all day and half the night. Since I can’t stay over, and since Heartland is SO FAR AWAY from our home and downtown, our time together during the week will be sparse.

It’s only for three weeks, four at the most. Then he’ll be home and he can start living in earnest. Plus, he’d been hinting that he might want to check out a Sony Playstation 2. So I went out last night and bought one for him. Now I have to figure out how to hook the darn thing up. Shhhh!! It’s a surprise!

Comments

Linda H. Johnson
Glad to hear Roberto is out of the hospital and doing better. Sorry about the GOM. Sometimes what is perceived as grumpiness turns out to be a front put on to keep others from getting too close, fear of getting hurt, etc. Maybe this roommate will turn out to be a friend. Let’s keep our fingers crossed.
Give Roberto my love.

March 18th, 2004

Heartland, Here We Come!

The doctor at Kindred Hospital had Robert undergo an echocardiogram to examine his heart muscle and valves to be sure there was no ongoing infection. That happened on Tuesday. The results were negative; the infection is gone.

This afternoon, after lunch, he will go to Heartland. It’s a bit of a drive, but I don’t mind because it’s an excellent facility. He gets good wound care there, a private room, nice meals, and it’s very conducive to recovery.

From there, three or four weeks from now, depending on his progress, he’ll come home. (Yay!)

The bathroom redo has stalled out as the contractor is waiting for some kind of special hinge for the pocket door he’s putting in. Once the hinge arrives, he can finish up laying the tiles back on the floor where the linen cabinet used to be, putting on the door, painting the trim and such as that.

Soon we will be ordering Robert’s wheelchair and shower chair.

March 16th, 2004

Moving Forward

Robert is still at Kindred. He’s days away from being moved to Heartland, a “sniff” (Skilled Nursing Facility a/k/a nursing home) for follow up wound care and IV therapy. He’ll undergo some more occupational and physical therapy to get him back up to a level he was at when he was at TIRR. But according to the insurance company case worker, he’s lost so much ground during his setback in February that he’s not yet a candidate to go back to TIRR. So he’ll go home and receive home therapy for awhile. Then (I believe?) he’ll receive outpatient physical therapy at TIRR.

We are in the process of ordering his wheelchair and accessories for the bathroom (transfer bench). The bathroom is being remodeled to widen the doorway and add a threshold ramp so a wheelchair can move easily over it.

The insurance company has said that they would provide (temporarily) a hospital bed until Roberto is strong enough to move himself about in the bed. So for now, I’m going to be storing our second mattress and box springs until we don’t need the hospital bed anymore.

As David Bowie sang, “Ch, ch, ch, changes….”

February 22nd, 2004

Back on the Right Track

Robert was transferred to Kindred Hospital, an acute care facility, last week. (Not well enough to go to TIRR, yet not sick enough to justify a bed at St. Luke’s any longer.)

He’s doing much better, his kidneys are back under control. He’s continuing his 4-6 week course of antiobotic IV therapy here, and after that, he should be able to go back to TIRR to finish out his last few weeks of physical therapy before coming home.

February 6th, 2004

Hospital Update

Robert is doing much, much better. I have been staying overnight since he got to St. Luke’s Wednesday morning. All the tests they’ve conducted (ultrasound [kidneys], echocardiogram [heart], MRI [brain, spine], CT scan [head/brain]) have come back negative. And it looks like they are getting his kidney problem under control. He’s got his appetite back and is eating and drinking, not Robert’s usual portion size, but at least he IS eating and drinking again!

I can tell he’s pretty much back to his old self. Before, he wasn’t interested in reading the newspaper or watching much television. He was pretty out of it on Monday and Tuesday. So I was very happy when I walked in last night and he was watching a basketball game on TV and had been listening to his Walkman. He ate the snacks they have been bringing him, his blood sugar numbers have been in a good range too.

Perhaps things are looking up.

Comments

Memo
Great news Joni! I hope it will stay good from here on out. Give bro my regards.
Out here we are in the deep freeze with 20F right now and expecting single digits for overnight.
Later.
Linda H. Johnson
It’s wonderful to hear some good news about Roberto’s recovery! Thanks, Joni.
I’m still planning on going to visit during Spring Break, which is the week of Mar 15. I’m not sure of the exact date yet because we have to take Carlos, our grandson, to Lubbock first. When I have a date firmed up, I’ll notify you.
Give my love to Roberto and tell him I’m praying for him.

February 5th, 2004

Come Saturday Morning….

Robert had a rough week. He’s been battling a pain that they cannot pinpoint, nausea and vomiting and loss of appetite. He also had a UTI. Nonetheless, he wanted to go home on a Day Pass Saturday. I slept over the night before so we could leave when he was ready. We got home around 10:30 a.m. and he laid around the bedroom and watched some TV and played with the cat. He didn’t want to eat or drink anything; I had to coax him to drink some diet soda so he could get his pills down.

He managed to cath himself, though, and got in and out of the wheelchair a few times. He stayed out a little longer than last time, as we didn’t head back to TIRR until 5:30 p.m.

At that point, we were looking at February 13 as his target going-home date. Things would change, and quickly, as the weekend came to a close.

January 27th, 2004

Chucky

Roberto had a bad day yesterday. He started feeling nauseated again yesterday afternoon and most of the evening. He lost his appetite yesterday during the day, but did manage to eat a little for supper last night (and keep it down). But he spent the evening heaving into a pink plastic basin. This continued this morning as he threw up his six a.m. meds. They re-dosed him at 8AM. Plus he told me that his fingers were feeling “tingly.” He promised to let the doctor know about this and about the constant upchucking (hence the title of this post). I’ll update with what I find out.

January 25th, 2004

Robert’s Grand Day Out

I stayed overnight at the hospital last night so we could leave for home as soon as Robert felt like it. He had to wait around for his morning medication, and then get his “take outs” for the day. Curfew was easygoing, the nurse said “Anytime before 9PM.”

He had another UTI, though, which they were treating with Levaquin. Robert knows from experience that some of his UTIs don’t even notice Levaquin. He may as well be taking M&M candies for all the good it does. But when the culture comes back early next week, the doctor will know what exactly is causing the infection (E. coli? something else?) and will be able to treat it more appropriately. But for now, they’ve prescribed the Levaquin.

I went ahead and got him started on D-Mannose, which is a natural sugar, so it’s easy on the diabetic. It’s great for a UTI. I used to be plagued with them all the time, at least four or five times a year. Until I started taking D-Mannose. It was the best $35 I ever spent. I haven’t had an UTI since, and it’s been almost two years.

It’s been developed by Dr. Jonathan Wright, a Tacoma, Washington, physician. Read about it here. It’s not junk science at all. But if it completely eliminates recurring bladder infections, can you see why the medical community wouldn’t be all that interested in touting its effectiveness?

Enough about that. About Robert’s day out. He had me cruise down 288 (South Freeway) just because he wanted to see how the car rode. He hadn’t been in it before, except once last week to practice a car/wheelchair transfer. But we didn’t go anywhere, obviously. He enjoyed his ride and we then came home. It was a piece of cake getting the wheelchair in the back door. He was able to move around the kitchen, hallway and elsewhere. The only problem is going to be our teeny-tiny bathroom. But the Occupational Therapy Department at TIRR is working on solutions to that for us.

I fixed him the lunch he had requested when he first knew he was coming home, his favorite salad (in fact, the only salad he will eat!), Hill Country Salad, which is just romaine lettuce, tomatoes, avocado, bacon, hard-boiled egg, fried chicken strips (we cheated and got the chicken tenders from the Church’s drive-through to save time and they were great, plus no mess to clean up!), grated cheddar cheese and (this is crucial) honey mustard dressing.

He had his meal, washed it down with Diet Coke and sat back and watched a little TV and visited with “his” cat, Sunny. Sunny was all over him like a cheap suit. He really missed Robert and it was great to see them interact. The wheelchair confused Sunny a bit. But he’ll get used to it.

Because of the UTI, Robert ran out of steam pretty quickly, so we packed up and headed back to TIRR around 4PM. I think Robert enjoyed getting out of the hospital for awhile. And the weather? We couldn’t have asked for a more beautiful day if we’d ordered it out of a catalog! The fates were definitely smiling down on us today, considering how ugly and wet and dreary this past week has been!

Comments

Linda H. Johnson
What a great visit Roberto had at home. And Joni, you’re a very good writer. I could see the two of you cruising on the freeway and I could imagine Sunny all over my brother.
I hope Roberto will be able to hold his food down. It sounds like he’s not having an easy time of things just now. Please tell him I’m continuing to pray for him daily.
And thank you for keeping us posted through this website. It’s awesome!
Memo
Way cool site and good news. Glad Roberto is able to move around and that they let him out now and then. Keep up the progress bro!
As to this site, I love it. This is great because I had called the room a couple times and no one picked up.
Had not had a chance to check it out as I went out east the day I got it and was just able to read the message before I bugged out. With the security overkill at the airports I didn’t take the laptop. It was a mess in DC and here it was probably worse. Ice everywhere. Had to bribe the cab driver(Mycki wouldn’t dare drive down the ridge) with a good tip if he made it to the top.
The guy was cool and just gave me a stack of blank receipts for me to fill in whatever. That works I told him. Anywho, now that I’m back will be checking it out daily.
Thanx Joni and Roberto, keep up the progress.

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January 22nd, 2004

Day Tripper!

Good news to report. I sat in on the weekly team meeting this morning. Robert’s pain has subsided. The doctor is 99.9% sure it was a muscle sprain. Let’s keep fingers, toes, eyes crossed on that! He had a CT scan yesterday to rule out other possibilities. We should know the findings from that CT scan later today or tomorrow.

We also practiced a wheelchair/car transfer on the Honda out in the parking lot this morning. It was a piece of cake!

Plus, the best news of all: Robert is getting a day pass for this weekend! Yayness! I am like a kid waiting for Christmas morning. I bet he is too. Well, that’s all for now.

January 21st, 2004

Taking it Easy, But the Pain Continues

Robert has been taking it pretty easy this week. He’s been in quite a bit of pain in his lower right rib. He and the doctor both concur that he somehow injured himself a couple of weeks ago while doing some exercises in physical therapy. He’s also been fighting a UTI and it’s very resistant to most antibiotic therapy. The drugs they were giving him for the UTI caused him to feel nauseated and to not want to eat so he’s been on an IV for hydration. Yesterday, though, he got his appetite back for the most part. He’s lost a little weight and is down to 211 lbs. now.

January 14th, 2004

A Step Back

Robert has had continual back pain for several days. He’s afraid it is a spinal abscess returning. Although I have read that they can recur, we are hoping that’s not what it is. Let’s rule out a muscular problem. He’s had a sonogram to rule out his gallbladder, x-rays found nothing and all blood tests came back negative for anything out of the ordinary.

Today he was seen by a doctor who thinks it may be some kind of muscular strain by the ribs. He is happy with her diagnosis for the time being, feels a little better today and wants to wait and see for a few days.

January 13th, 2004

Welcome to Roberto’s Place

If you are seeing this message then you’ve logged in successfully. Here’s where Roberto and I will share updates concerning his health and recovery from a spinal cord injury.

Friends and family, if you wish to contact Roberto or me, just send an e-mail (see sidebar). Updates will be posted here when there’s news to add.

Feel free to ask questions in the forum (Discussion) or leave comments. Thanks for stopping by and keep Roberto in your thoughts and prayers.

Comments

Linda H. Johnson
Thanks for setting this us and for keeping us informed on Roberto’s progress. It sounds like he’s having some discomfort. I hope this will not be for long. I mailed him a letter today, but I sent it to your apartment. I’ve called him a couple of times at TIRR and he hasn’t picked up. I thought maybe a letter would convey to him that I haven’t forgotten him. I love him and pray for him daily.
Bye for now.