Kevin’s MS Blog

An invite to Myrtle Beach and a tearful goodbye :-(

Thursday, Dec. 4

 We were up and showered early today as our American friends were leaving on a jet plane.  Kevin was so weak earlier today…”I can’t go to see them….give them my best:”….as they say around here, “no problem”…I scooted off to their room around 8 to return the pc and see if I could help…..10 minutes later, Clarence and family arrived too.  It wasn’t 5 minutes later that I heard Kevin….”I just had to come no matter if I had to crawl here”…He had walked to the nurse’s station and picked up a ride from there.  They have a couple of wheelchairs for patients to take out on excursions.  Along came Robyn and Bobby and we all headed to the nurse’s station for pics……all of the staff on duty came too….lots of pics and lots of tears….not me, but biga baby….shhh, don’t tell him I told you that…..” these stem cells are making me too sensitive”…yeah, yeah….what;s a few tears between friends…right, Coloris??  Off they went, the 4 of them, Rebecca, Jack, Luca and 12 bags of luggage….betcha it was a quick elevator ride to the bottom!  Sad though…Rick and Susie live a couple of  hours away from Myrtle Beach but have a family condo there….They have mentioned on several occasions about us coming to visit….they mentioned sept or oct being a great time….they had me at “beach and shopping”….they had Kevin at “local car show” and “access to alot of Nascar drivers”…..nice…..See you in September…..ya gotta sing that part, people!

He slept for a while after lunch and I did laundry….she was late today but it wasn’t like I wasn’t going to be home……I cut off all the laundry tags and put everything away.  To keep things quiet so he could sleep, I went to write the blog but found my favorite child here, Ella, in physio in the computer room.  She wasn’t wanting any part of it today.  She has had a really rough go of it this time and has picked up a cold virus and has been miserable with it.  She has had a fever for the last couple of days and is on the same schedule as Kevin for stem cell treatments.  Unfortunately, the doctor came in to let them know that her treatment is cancelled for tomorrow.  She is still running a temp and they have run tests.  A Ped doc is coming to see her and they have put her back on an IV.  She has been running at both ends, poor little thing.  Rough nights on Mom and Dad.  She can’t have a treatment if her fever is up as it kills the stem cells.  They have given them the option of having one treatment fee returned or extending her stay in order to complete her last 2 stem cell treatments.  Tough decision….anyways, while in physio, I started playing peek-a-boo with her….I got her attention for the next half hour and took her mind off of what Kerri was doing with her legs…later I went to her room and played with her again so mom could at least have a shower and get lunch ready….late but better than never.  She’s such a cute kid.  We watched her another afternoon and Kevin started stretching out both of his arms to her.  We made it a game and she was giggling pretty good…in the end, she would stretch out both of hers and wait for Kevin to do the same and tap her fists with his…..please understand that this child has cerebal palsy and seldom if ever moved her left arm….huge for her.  Now, as soon as she sees Kevin, both hands come up….it’s their own secret handshake!  She won’t do it for anyone else……

when I returned to the room, Mr Jones had slipped out to Clarence’s room and apparently skunked him at crib…..go, Kevie……We slipped back “home” for supper….ordered out tonight..let Kevin choose supper…he felt like chinese.   After supper, he went to lay down and I went to see if there was a computer avaiable….today is my lucky day…hahaha…..free one!  Wrote a blog update but still no pictures.  Louise came in and we chatted for a while.  I better go check out the big guy….he’s not there??  Gone to Clarence’s again….I’m starting to think my welcome mat is wearing thin and he’s missing the guys at home.  At 8:30, Helen came and chased us back to our room….tomorrow is stem cell day….last lumbar puncture…..early night for Kevin…..ok, Helen…we’re going….when was the last time you were chewed out for not being to bed on time!??

Casey is on the 1:00 am to 8:00 am shift so she’s in the oncall room until then….she came in for a little visit first….run Casey!  I hear Helen coming back…..:->

11 comments December 5th, 2008

The last night for the old gang

Wednesday, Dec 3

Another cool but beautiful day in Xioshen (pronounced showsen….the xio makes the s sound and the sen makes the shhh sound….go figure)

Kevin did another round of exhaustive physio today.  One part , he lays down and Andy puts a 5 lb weight on his weak leg and he has to lift it slowly up as high as Andy’s hand and back down.  He can do it the first 10 times but then gets weaker….Andy, puts his hand back down by his side:  “5 mo” ….I’m trying Andy….Did you put your hand higher?? I can’t get it at all…”you keep try, Kevin”….jeez, Andy….Tracy, did he put his hand higher?? No, dear….I swear his hand is not higher…….Andy never did tell him the difference…joker.

Then came accupuncture….man, did it hurt today….it near lifted him right off the bed….I felt it too….now, I know what you are thinking….you’re right, I didn’t feel one needle but have you ever held the hand of a grown man getting accupuncture….vise grip…..turns out if he is going to be in pain…so am I!  Too bad we’re finished having kids….I could have taken out a lot of miles with that one….:-)

Went with Rick to the RT Mart to pick up a couple of things.  He also wanted to pick up a fruit basket and flowers for the staff.  Looks like KFC for supper tonight but we picked this up ourselves as it is always cold by the time the delivery service makes it to the door.  Rick and Susie, Robyn and Bobby are leaving in the morning for home.  Just leaves Clarence, Louise, Leslie, Kevin and I…..the last mohicans……the rowdy gang.  All of the new people in have young children and we rarely see them.  We truly were blessed to come when we did.  It gets pretty quiet around Christmas and Chinese New Years (Jan 26)….less people here. I went to see if there was anything I could do for either of them….they were so busy weighing and packing, throwing stuff into different bags….fun to watch! They arrived at our door with 7 bags of groceries and supplies….like Christmas…Look Kevin!  Baked beans….Wahoo!  You have to be here a month to really appreciate receiving a can of beans…what can I say……we split everything with two of the other rooms and put alot of stuff on the community shelf too……fill yer boots, people. 

Around 7, the gang went into the Recreation Room and had munchies and cake, took pics and had a lot of laughs….We have all vowed to have a reunion next year.  9:00 saw us in our room.  Rick had a Magic Jack, which is a little device you plug into your computer’s USB slot and then plug your phone into it….make all the long distance calls you want…NO charge…nice….he told us to take his laptop to our room and call away.  He would get it in the morning.  We tried to call everyone we could, who was home.…that was such a treat.  We went to bed around 1:30 am …..shhhhh!

1 comment December 5th, 2008