MEMORIAL DAY

Memorial Day-a time to remember, and eat with family. Erik and I spent the afternoon yesterday with Tom and it was very nice-he was proud to walk with Erik down the hallway, standing pretty straight, using his walker for help, but doing quite well-still wobbly on occasion, and has a ways to go for more strength, BUT ALL SYSTEMS ARE GO, they have stabilized everything now and infections are mostly gone. They are to take trach out completely tomorrow, so that will be a major milestone, and his open wound there will automatically close within a week. AND they plan to get him over to re-start his THERAPY on Wednesday if all goes as planned-he is ready and yet will be grueling, as they say they work them on and off for up to 6 hours. So maybe this will move along now-father's day is coming, then July 4th, then Labor Day--where will we be?? Not sure, but at least we are going in right direction.
Thanks to all who keep touch, and think of us, and write us-means so much. And I continue to love all of the photos/graphics! Thanks much to Sharon!
Am baking and cooking this afternoon-will get together for eats with Erik and all-and then will share banana bread with TOM tomorrow!
Lotsa love to all, and it is good to remember..

40TH ANNIVERSARY -- MAY 30TH

HAPPY 40TH ANNIVERSARY, TOM & MARILYN!

A SPECIAL HUG

HUGS AND LOTS OF LOVE!

LOVELY WEEK-END BUT zig & zag WITH TOM'S PROGRESS...

IT'S A ZIG, then a ZAG--

just took Jon to airport-- week-end was lovely, but we are still all concerned-Tom was droopy on Sat. and having trouble breathing as they downsized his trach and plan to possibly remove it soon--we took him some cookies that he loved, plus he had a piece of pie for lunch, and when we went back later that day with Erik, he was edgy and his blood sugar had raced from normal 110 to 360! Very serious and they labeled him diabetic!! SO that is how fragile it all is-Sunday morning it was back down to 129, BUT they also had put him back in ICU to get his breathing stable, and that was greatly helped by dialysis - 3 LITERS worth again--so when Jon and I saw him later yesterday, he looked and felt better, but still was not eating again until this morning--it is a VERY DIFFICULT road, and we all three are trying to cope, sometimes in different ways--Jon tends to be practical/solid and one-day at a time, Erik does his homework and begins second-guessing what is really happening, and I am somewhere in between--
I have been called to a meeting this Wednesday in Apopka with his primary doctor as they are Concerned, so we are all interested in what transpires-Erik will go with me and Jon will be on speaker phone-we also are requesting a conference at hospital with Tom and his doctor team to further explore facts--90 days were up yesterday, and he is FAR from well--can hardly stand, but is weak from these ongoing infections probably which have to take their course..

SO, we are all preoccupied, interested to see how this week shakes out, and I am trying also to work with a very good appointment tomorrow-
Jon got the tires rotated on my car, an oil change etc. so that was so helpful too..and today the engine light came on so will have to check that out..
Hope all are well and love to all every-where!

FAMILY ALL TOGETHER!

JON is here and it is wonderful-we had a good time last night eating and talking at the house as a family,and this morning, Jon and I went to Hospital to be with Tom-again, he had little sleep as they interrupt every hour or less to test him/lab him etc., but he was so glad to see Jon. He was sitting up in chair, had eaten a good breakfast-

We plan to go back later today, with Erik too, to see him again-Jon sees the vision of "health" and that is the goal, no matter how crooked the path, how long it takes-let's hope that is all achievable. When we came down to hospital lobby, there was a bomb scare in the medical area and we were not allowed to leave with police blockades every where-but finally, we went and still do not know what nutcase caused that! One never knows these days.
So we shall venture back, and again tomorrow before Jon leaves Monday for work-cheerio to all-

ABOUT THE SAME....

Tom was sleepy yesterday, but about the same -- SO today Jon is coming and we'll see if we can "make a difference" over the week-end -- He has slipped from all these infections. BUT he is eating pretty well, so that should help soon --

I am on my way to airport to pick up Jon.

SUNDAY TURNING A CORNER....

TURNING A CORNER??

-that is what he said when he called me tonight after seeing him today-they did a small procedure on him in surgery this morning, but it was local anesthetic and all else is stable-he is in ICU yet back in Orlando, BUT they were to step him down this evening to a regular private room-hurray--I met my Jersey friends, John and Ginny, at Hyatt Grand Cypress and we all went to see Tom in downtown Orlando and we had a GREAT time-I have such dear friends. Then they treated me back in hotel for dinner, conversation and lotsa love reminiscing and some future plans for Tom to look forward to as well--I believe now he can start therapy again and be up and about much better-he is eating, and even with such great weight loss, he can stand and walk, turn around etc. without feeling dizzy-so off we go!!

There are many unknowns yet, but we are taking one day at a time, and there are many hopeful thoughts surrounding us- Enjoy the beautiful spring day, and I am getting shingled tomorrow with my new roof-another hooray..More to come-

CAN YOU USE A HUG TODAY?

TOM BACK IN ICU WITH INFECTION

Tom was moved back into ICU with an infection, but hopefully will get on top of that quickly and get back to rehab and on his feet again. A bump in the road on this recovery journey...

KEEP CHEER & HANG IN THERE!

MOVED FROM TAMPA TO ORLANDO!

Tom got back to Orlando late yesterday (Orlando Regional Medical Center) -was put in a nice room to start rehab (Lucerne Pavillion), but hospital discovered his blood pressure was a little low, he had a slight fever, and his labs were "screwy", so they moved him to another regular hospital room to stabilize that before rehab-he is tired all this week, probably a little sad and depressed, which is understandable, but the first we have seen really-SO I am headed there this morning to see him, cheer him, and see the situation-it is on other side of town, but very nice and affiliated with the big Orlando Hospital there-will write later to update-meanwhile, roof materials are to arrive, hopefully today, and start tomorrow--a little crazy, but rolling any way-LATER-


"Feel like resting this week!
It's been a long journey to get this far! Will gear up to truck on again. Hear they're goin' to work me hard at this new place!"

MOTHER'S DAY VISIT WITH TOM

ROCKING IN PLACE-Saw Tom yesterday with Erik for a lovely mother's day--beautiful sunny florida--he was a bit sleepy and quiet, but we had a nice time and we are awaiting anxiously any word hopefully even today on the next step of moving him for more thorough rehab-he is quite bored now where he is, and it is TIME-he told me today his current weight now is 215 pounds-and that is amazing, and also a bit scary--he has not weighed that since a senior in high school!! -- he needs to eat my chicken kiev etc.!! No real other news, so just rocking in place. Will be so nice to see our Jersey friends John and Ginny Lord later this week who are vacationing in Florida now! Getting work done on house, little chores as well, and new roof this week! Love to all-will let you know!

HAPPY MOTHER'S DAY!

HAPPY MOTHER'S DAY!

Have a wonderful day!

STARTING TO EAT AGAIN!!!

AND EATING-he started soft foods yesterday morning and said the applesauce tasted like something from the fields--am sure he has no sense of taste or smell after all this, so it will take time!!No more extra thousand island dressing!!

Continues to progress, and we talk 3-4 times a day-I am homebound as there is a new roof coming and tilework done, and some millwork-and now that we can talk, it surely saves the LONG ride over--he is doing so well that they may move him on soon, closer to Orlando, for more therapy etc. I called him yesterday morning at 10:A.m. and he said to call back in 20 minues-he was stark naked, and he had "20 nurses lined up!"-Still funny as ever, and he will be a bit of a celebrity when he moves on-everyone stops in

to see him!

Onward and upward-
Love to all, Marilyn

A GREAT WEEK!

WHAT A WEEK-we saw him yesterday and he was TALKING for real--looked great, skinnier than before, and all vital signs are stable and he is totally breathing on his own now and VENT is gone--so TODAY he is to do a swallow test to make sure it goes into his stomach and he will begin eating soft foods--hurray-dreaming of cheeseburgers and has forgotten what they taste like! Erik was dumbfounded to hear his voice and it made Erik's whole day! We instantly called Jon and he talked to Jon at length-another great moment!

With balloons and red geraniums gracing his room from Kent and Sharon with love, it was a beautiful afternoon in so many ways. I brought him his cellphone and charger-he told me to charge his phone and I said it didn't need to be charged, but he insisted--I looked at him sweetly and asked "do you want to argue?" and he so sweetly looked back at me and said-"I don't want to argue any more-I made that decision" and I was so touched..
He is determined to have a busy week and he loves his therapist who walks him, and he told us he begged her not to let him "fail" and she promised he wouldn't-he is so determined now to get well, and he is making great strides. Dr. Edwards, his favorite kidney doctor in Orlando whom we love, called me Saturday noon to see how he was, and was ecstatic that he was talking and walking--it gives a doctor great satisfaction, and I shall never forget his comment--"When the mind is all in tact, then the body follows behind"--and that is truly the case here-he told me to tell him to keep fighting for "both of us"-Dr. Edwards and Tom!!
IT WAS A GREAT DAY IN EVERY WAY-love to all, and thanks to all. He may be calling YOU!
His cellphone no. is 321-947-0704, but cellphones are not promoted in the hospital, so I shall caution all to be sparing--I even have trouble getting through because they are always doing something, but I also know how thrilled he is to be connected back to the world!
He asked Erik a lot of questions again, and he surely doesn't remember much of the first long episode of all this, but now grasps most all and is very aware it is MAY already-we need a vacation!