Sunday, April 26, 2015

We’re in Santa Clara, California


Once again I’ve had Lorraine attempt to write her section of our blog.  It’s taken her awhile but I can see improvement over the last time.  Anyway, here is her thoughts. 

April 26, 2015                                                                                                                      Lorraine’s report

So I would like to let you now one more time I will be having another surgery (16 so far)  This one is going to be in my vein (right side) and in my brain.  Who knew it would come to this.  I know this isn’t the end of the world, but it feels like to me.  So I’m asking  for thoughts and prayers for all my friends.

This week have been busy with all therapy.  It is sure hard to go back over lots of the work I did the last time I went through work therapy; since November 13.  And it is still as hard as it was before.  After working on three classes, I’m beat, I have head ache and I need to got to bed. 

It is still hard to write for the blog, but after many tries, I finally make it.  But please keep me in your thoughts and prayers, I will need it.  Thanks for everything.



4/26/15                                                                                                                                 Chuck’s report

We didn’t do enough to warrant writing a blog last week so this one will cover both weeks once again.  And even at that, this one is not going to be filled with exciting things we’ve seen and done as there just aren’t that many of those. 

Two weeks ago was spring break from school for Katie so we planned on having her around with us a bit more than usual, yea.  And it was also a week filled with Katie’s 10th birthday.  Her Dad had gone to China a couple of weeks ago and bought her some presents from there.  Seeing as he had to work that evening, she was able to open them in the afternoon, she was really excited to open them for sure.  She got Star Wars figures and such plus a neat looking keyboard.  That was only the first of many present opening times for her over the next few days.

We later went to dinner at Katie’s favorite “steak place”, Black Angus.  I don’t know if she likes the food as much as she likes the plate sized, hot chocolate chip cookie for desert.  But whatever, she enjoyed herself I think.  Later that evening she opened some presents from her Mom and some from Lorraine.  She got more Littlest Pet Shop and My Little Pony toys plus some clothes and such. 

On Saturday the 18th Katie had her party with her friends at Pump It Up, a place full of trampolines and set up for kids to have their parties there too.  She had her party there last year but was in foot cast due to a broken bone so she couldn’t get on the apparatuses, a bummer time for her.  So of course she was really looking forward to this year’s exciting time.

I think there was a total of 10 kids at her party plus they had at least 5 other kids celebrating their birthdays at the same time plus others just being there.  All this to say it was a busy, very noisy place with lots of happy kids running around and having fun. 

Once again Katie got to open birthday presents, once again lots of My Littlest Pet Shop and Little Pony toys plus other stuff.  I suggested she may have to get rid of some of the things she already has to make room for the new toys.  (Bet you can figure out the answer to that suggestion!)

Anyway, things were going real well until right at the end when Katie was in one of the areas and a bigger kid jumped on the same area where she was and hurt Katie’s foot.  On Monday she went to the doctor for x-rays, no broken bones this year, just an apparent strain.  She didn’t get a cast but does need to use crutches to keep weight off it for awhile.  If she continues to have lots of pain they may put a cast on her in two weeks. 

Afterwards Katie got to open more presents from Mom, Dad and Nana.  She sure got lots of stuff and I even got involved opening the boxes and such.  Boy they sure pack those toys in plastic and tied down, some really take awhile to get opened.  But eventually she got them all unwrapped and with the help from all the adults, got them opened too. 

Katie has been back in school this past week but her Dad is teaching an after school program there so he’s been picking her up most days although we do get together later.  One thing for sure, I need to stay away from the birthday cakes and such and loose some weight. 

Susy had shoulder surgery in February and seems to be healing nicely from that although she does have some residual pain and stiffness.  She did see her doctor about some pain issues but they think it is a ligament, not anything to do with the surgery.  Sure hate to see her suffering though. 

Now on to Lorraine’s recovery.  She has been having in-home therapy from all three disciplines twice a week.  But her case manager is the physical therapist and when he thinks she has recovered enough, they stop the in-home therapy and she has to go to outpatient therapy.  And of course, they all have given us some work to do on the days they aren’t here, homework for Lorraine so to speak. 

On Thursday Lorraine saw her eye doctor again, it’s been two weeks.  He ran some tests and was pleased with the amount of recovery she has, yea.  She is still having double vision issues when she read while doing her homework and still has no peripheral vision on her right eye but even that’s getting better. 

Then it was on to her regular doctor for a check-up.  I had a list of questions for him, most important was why didn’t he put Lorraine on baby aspirin and Plavix when we first saw him after her first stroke, what the neurologist told us should have been “stoke therapy 101”.  He sort of hemmed/hawed, said he couldn’t find anything in her records then tried changing the subject.  With that kind of “help” we think that Lorraine needs to find a new doctor in this area so we are going to be interviewing a couple this week. 

He did say he would send a prescription to the place we found for outpatient speech therapy.  He didn’t have a good suggestion for anywhere, just told us to let them know when we found a place.  Lots of help there.

He did give her a new prescription for Plavix, a blog clot preventer that all stoke victims should take and Lorraine has been taking since she was in the hospital.   When we filled the new prescription from Wal-Mart, it came with a few pages of info, which I read.  It said not to take one of the medicines that Lorraine was taking along with Plavix.  I called the doctor’s office and talked with his nurse who said she would pass on my concern to the doctor.  She called  back later and said, yes, she shouldn’t be taking them together and would get a new prescription to replace the original one.  Another strike against this doctor, he didn’t take time to review her medication list before writing a new prescription.  For sure she will be getting a new doctor now!

Friday was the last of the in-home therapy, good news – bad news kind of thing.  Good because she is getting better and can do out patient therapy, bad because it is more of a hassle and she does like the speech therapist she’s been seeing.  None the less, we must move forward.

We checked around and found that if she needed physical therapy, there were lots of places that could help us.  But speech therapy is a different thing, we could only get it at retirement centers or hospitals.  We checked a couple of hospitals and found they didn’t have speech therapy, only physical, shoot.  But finally we did find a place associated with Good Samaritan Hospital.

When we checked them out, they told us to have the doctor fax them them his orders except their fax machine was broken.  Then they sent us to the second floor to check out a supply place and the elevator is out of service too.  When I couldn’t find the supply place, I asked around and they said they had never heard of such an office but it might be on the third floor.  But once again, no one on the third floor had ever heard of the place either.  This place wasn’t giving a good first impression for sure but we did make an appointment to see the therapist anyway. 

This past Thursday Lorraine had an appointment with a Radiology and Endovascular Surgery Specialist.  This guy checked over all the records we have from Lorraine’s stroke and he wants to do a Diagnostic Cerebral Angiogram.  This is where they put a camera in a artery in her leg and send it through to check out her carotid arteries and then into her brain to check the blockage there.  They do not plan on putting in a stent at this time but mostly just want/need this info for any further work on her. 

This procedure is scheduled for this Friday at 10:30, need to get all the prayers and good thought headed her way for this one.  The doctor said this procedure usually doesn’t cause any other problems, less than 1/2%  have issues but still cause for concern.  She will not be asleep as they will need her to answer questions during the procedure but will be heavily sedated.  And once again they will be putting in a dye contrast for x-rays to check out the blood vessels and arteries in her brain.  Sure hate to have Lorraine going through this stuff but have high hopes for a great outcome.  And we both have a good feeling about this doctor, seems really nice and knows his stuff. 

He also said she should have been on the aspirin/Plavix therapy since her first episode, also said it might have prevented this latest stroke but of course can’t say for certain.  He said if she has three episode or problems after being on “this first stoke therapy medicines” they may consider putting a stent in the artery in her brain.  If I read his body language correctly, he was not pleased with the “care” Lorraine was getting from her current GP and when I asked, he gave us the name of someone he would recommend. 

Later Lorraine had her first visit with the new outpatient speech therapist.  They hit it off well and the gal wants to see Lorraine twice a week for awhile.  She told us that she has hope for Lorraine to recover fast, well and should get back to normal based on how fast she has recovered so far, great news.  So we made some appointments and will be seeing her over the next few weeks.  She also said that she has lots of supplies and handouts and that I shouldn’t buy any as Lorraine would “outgrow” them quickly.  And she also didn’t know of any supply office in the building like I had previously been told and sent on a wild goose chase trying to find. 

We have been doing some spring cleaning in the coach over the past week or two.  Lorraine and Susy went through a section of her closet to purge some of her things.  I carried four large garbage bags over to the Goodwill shed nearby and got rid of those items.  We also shampooed all the carpets and throw rugs in the rig.  And we found fleas on Misty so had to treat her and the rig for fleas too. 

We were giving the ok to stay here at the Elks lodge longer than the two week maximum.  But we will be needing to move for three days the first week in May then will do the two weeks in, three day out until we leave the area or until we find a place in the local, private campground.  It’s full now and has a large waiting list but we are on it and will probably move over when our name comes up unless it takes too long. 

The weather has been really nice the past two weeks, even had three days of rain showers too.  The high temperatures have been getting to the mid 70s most days, even into the 80s a couple days.  Night time temps are pretty nice too although we do need the heater to take the chill off. 

I know we have taken lots of pictures this past two weeks, mostly of Katie celebrating her birthday.  I’ll go through them and add some. 

Katie opening some presents from her Dad on her birthday.  Her picked these up when he was in China. 

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More presents later.  The one on the right is probably her favorite Littlest Pet Shop toy. 

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All dressed up with new clothes, including new shows that have lights on them. 

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At her birthday party with friends. 

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Susy and Katie at her house on the right. 

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Thanks   Chuck



Saturday, April 11, 2015

We’re in Santa Clara, California


I asked Lorraine to attempt to write something for the blog this week.  She is very apprehensive about doing this, doesn’t think she can.  The following is exactly as she typed.  It took her over an hour to do this but it shows lots of progress for her. 

April 12, 2015                                                                                                                          Lorraine’s report

Hello ever one, I’m trying to write.  It has been extremely hard to make cense of my thoughts and words.  I can see only part of my right side, and the rest is blank.  But I am getting better, but it is so hard!!!.  I do 3 types of therby for 3 days different days each week.  It is almost too much for me and I am very tired after it all is said and done.. 

I am so blessed I did not suffer more affects than I did.  When I passed out from the lack of oxeycen that day in Pismo Beach, I thought that was the end of me.  I don’t know how long I was out, but the took me back to the bay, Arroyo Grande by ambulance and watched me for until I woke up.  During this time, Chuck and Susy both had a lot of “ going on” tying to see if I needed that pill I needed to take.   I woke up after a few hours, and I didn’t remember anything from that day.  It was so strange to me;  Chuck said all of a sudden I woke up and rubbed by head.    I AM STILL GOING THOUGHT THESE DAYS TRYING TO PEIECE  SOME OF IT. 



4/12/15                                                                                                                                     Chuck’s report

Probably a boring blog for most people this week but I want to record the issues we’ve covered with Lorraine’s recovery this week.  Most of our happenings have been with the three therapist (physical, occupational and speech) plus their homework for Lorraine.  She dislikes doing her homework about as much as Katie does but we get ‘r done anyway. 

The PT is really pleased with her progress, only having her do some exercises and wants her to walk more.  We go for a walk at least once a day, glad the weather is nice here.  I would say her physical recovery is above 95%. 

The ST is having her identify and say the letters  out loud as she reads from a piece of paper.  She is having trouble identifying the letter Y and sometimes X and gets G and J confused sometimes.  But she is getting better on these things.  She also has to name as many items in a given category as possible in five minutes.  Some of these she can do really well, others she struggles with getting more than just a couple.  One hint she was given is to close her eyes and imagine herself in a situation where she can visualize these items, i.e., in a grocery store when thinking about vegetables or a fruit stand for identifying fruits. 

The OT wants her to try to explain/describe something and we are to guess what she is thinking about.  She usually only gives two descriptions and when pressed to give more she has trouble doing that.  But she is doing pretty good guessing what we describe to her.  She also has to trace shapes on a piece of paper, doing real well with this part of her therapy.  

Her vision has remained mostly the same, no peripheral vision on her right side.  She also complains about having double vision when doing her homework so we have an eye patch to cover her “bad” eye when she see’s double, seems to help.  The eye doctor said he thought her eyesight should return to normal over a 6 month or so period but so far not much improvement here as yet.  

When Lorraine was discharged from the hospital they told us to see a neurologist and have him/her check things out.  Lorraine’s GP gave us the name of one in San Jose but when I called we couldn’t get an appointment for over a month, way too long for me.  I called the GP and asked them to intervene and see if they could get us an earlier appointment. 

Well, we got a call about 12:30 Monday afternoon when the OT was here working with Lorraine and it was the neurologist’s office.  They had an opening later that afternoon at 3:10 and wanted to know if we could make it.  The only issue we had was picking up Katie so I called her dad and arranged for him to pick her up, no problem.  We got to their office about 20 minutes early and spent most of that time filling out paperwork.

Finally we got called back to a waiting room and a couple of minutes later the neurologist came in.  He was a very nice fellow, didn’t “talk down” to us and answered any questions we asked.  He had a tough time figuring out what happened and spent about 20 minutes or so reviewing the MRIs and CTs plus reviewed all the reports from the hospital.  Finally he seemed to understand, guess the info wasn’t in the proper order so he had to hunt longer than usual. 

Anyway, he told us she had signs of two stokes (we knew that from the hospital stay), said both were “significant” and told us how lucky she was to be doing so well.  He also showed us on the MRI where the strokes were located in her brain, really something to see this technology. 

He didn’t understand why Lorraine wasn’t on an aspirin a day therapy therapy since the first stroke.  We told him the first one was thought to be a TIA vs a stroke.  He said it didn’t matter, a baby aspirin and Plavix was post-stroke control 101.  He implied that may have prevented the second incident but of course couldn’t say that with 100% certainty.  But that was enough for us to consider finding a new GP for Lorraine as he should have been the one to start this therapy for her back then. 

He also suggested we think about staying in one place for awhile, maybe up to two years so she could have continuity with her doctors vs seeing different ones across the nation.  We are working on different solutions to that suggestion, have plans A – X or something like that.  We have been talking through lots of different ideas this week but for the immediate future we plan on staying here and continuing with the doctors we’ve been seeing with the possibility of a new GP in the mix.  

He also gave her the name of another specialist to consider placing a stent, something they considered but decided against when she was in the hospital.  But this guy is considered to be one of the best on the West Coast so we are hoping this will settle this issue once and for all.  But here again, we can’t see this guy for another two weeks unless they have an unexpected opening before then.  

This week we tried having the therapy sessions spread out over the full week, only having one or two a day.  Next week we are going to try having two or three a day with some days off in-between.  On her days off we can have a more normal routine and work on her homework. 

We’re thinking she may be finished with the PT  and OT in two weeks but will need ST for a longer time, we’ll see.  And we may not be able to keep the in-home therapy going, we may have to travel to a therapy office or hospital for awhile to continue with the ST. 

We’ve also been picking up Katie from school most afternoons.  I know having her around is helping with Lorraine’s recovery.  Katie loves to play the therapist’s role and have Lorraine do her home work.  Sure glad we have been able to spend as much time with Susy and Katie over the past few years!!!

On a side note, I did have my birthday a couple of days ago.  Lorraine posted something on Facebook and lots of folks sent nice notes.  As I don’t do Facebook, I’ll just thank everyone for all their well wishes. 

I’ll go through the pictures we took this week and see if I can add some here. 

Susy and Lorraine on the left, Susy, Katie and Lorraine on the right.  This was on Easter morning.   

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Katie after the egg hunt. 

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Susy helping me blow out the candles on my birthday cake, of course, they are the type that relight themselves, ha ha.  Katie at the table with her favorite stuffy. 

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Katie’s dog Dora with the humiliating collar that makes her look like a flower.  

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Ok, guess that’s enough for now, will get this posted. 

Thanks   Chuck


Monday, April 6, 2015

We’re in Santa Clara, California


4/6/15                                                                                                                                     Chuck’s report

Time for an update on Lorraine’s recovery from the stroke she suffered on March 22, 2015. 

We have finally gotten at least one visit from all three therapy disciplines, physical, occupational and speech.  I’m still a bit confused of where physical stops and occupational begins but basically occupational is dealing with ordinary items in life.  But regardless, she has “homework” from all three that we need to do, everyone says Lorraine is showing good sings of improvement, including me. 

The occupational gal has Lorraine reading letters of the alphabet from a page out loud, find certain letters in a string of letters, find words hidden in a string of letters and such.  The speech gal has her name objects, write down the word for the object then write a sentence using that word.  She then will describes something and Lorraine has to try to name whatever she is describing.  Next she has Lorraine name as many things in a category, such as how many vegetables can you think off in 5 minutes.  The last test is to hold a conversation with her, this time it was to tell her what we did this weekend.  Lorraine told her she felt like she was doing a physical test not just mental. 

We also have Lorraine name things while we are walking, what the object is used for and so on.  Mostly this is to get her to verbalize whatever she is “seeing” in her brain.  Even though she gets frustrated and tires easily, we are still doing homework often although we didn’t do a lot yesterday. 

The speech therapist said Lorraine is able to understand what she sees, reads or hears and process all that info fine; her problem comes from “confrontationally input”.  This really shows up when she is confronted with a question from someone, she has problems with the answer.  This is why she was having issues showing us where her elbow was or coming up with proper names for items.  Both the OT and speech therapist are working on basically the same things in this problem area.  The OT is working more on the her vision loss than either of the other two therapists.

We went to an eye doctor this past week, he checked our Lorraine’s eyes and told us there is no physical problem with her eyes and was pleased to see how much vision she has recovered since her hospital stay.  He is fairly certain that she will continue to improve in this area too, yea.  We have a follow-up appointment with him next week to see what improvements he sees in the past two weeks. 

This past week we’ve picked Katie up from school, most days she had some homework which we tried to get finished before she started playing.  She is really into My Little Pony, Little Pet Shop (LPS) and Shopkins.  She likes to keep up with some gal who posts movies of her LPS online, I guess this gal has over 1,000,000 followers.  Katie is starting to paint some of her LPS figures and makes movies of them using a phone.  Boy, kids are sure not afraid of technology and even this 9 year old knows much more than I do.

Susy returned back to work after being off for almost a month.  Her boss had some guy following her projects while she was off but seems the guy didn’t spend much time on Susy’s project so she had to hit the ground running to get caught up and get back on schedule to meet her deadlines.  She said the first day she was back to work she had a headache in the first hour.  But last time I asked her, she said she had her projects back on track and her boss had noticed her replacement guy hadn’t done much work while she was off.  Susy has been stopping by our place after work to visit and have dinner with us then she and Katie head home for the evening. 

A couple times this past week I’ve taken Lorraine out to a store, she does just fine, remembers what she needs and where to find it in the store.  For example, if we need a can of soup, she remembers and knows which isle to find it.  That’s a good thing because I really have signs of old timers or CRS (can’t remember stuff).

The day before Lorraine had her stroke we were out four wheeling in Pismo Beach area, had a great time.  Only issue we had was our camera got dropped and now the lenses won’t open and when that happens the camera won’t turn on either.  I checked at a couple of places for a replacement but we want one that is a point and shoot that has a “view through the lenses” feature.  I guess nobody makes them with this feature anymore, instead the LCD screens now move and rotate so you can see them better in direct light.  But Lorraine really likes the view finder so it was to the computer for Amazon and EBay. 

I’m not real literate on these sites but Susy is an expert compared so once I found what I was looking for, she was able to finish the order for us.  We ended up with a “buy now” on EBay, Susy knew how to make an offer for less than the buy now price and they accepted our offer.  We paid $10 for shipping and two days later the package shows up at Susy’s house.  We bought the same model number of the old one and this one appears to work fine.  I actually looked through the user’s manual and was reminded of a lot of features that we never have used, probably never will either.  But we now have a camera again, although with the cameras on both of our phones we thought about not getting a real camera but it’s nice to have, just old fashioned I guess. 

We have an ink jet printer in our rig, we don’t use it too often and it’s been giving me problems lately and this week the it ran out of ink.  Saturday we headed to Fry’s Electronic store to get new ink and found the ink cartridges were more expensive than a new printer.  They actually have two printers on sale for less than $30 and they included the ink. 

But Susy recommended we think about getting a laser printer instead of an ink jet, cheaper per copy and less trouble.  They had a couple on sale but they didn’t include a copier so we were just about to walk out when a salesman guy came by.  I told him what we were looking for and he found one that was less than half price and “just happened” to be on sale today too.  So we ended up getting a new laser printer, copier, scanner and whatever other features it has to replace the ink jet.  We also bought a new toner cartridge for it as the one that comes with the new machine doesn’t print but about 50 pages before it runs dry.  So now we have both a new camera and a new printer or should I say, a replacement for both. 

After our trip to Fry’s, Lorraine and Susy dropped me off at our rig while they went back out shopping.  I was able to put the printer together and get it to work.  It’s a wireless type, first time I’ve dealt with one of them but it’s working so must have done something right.  Of course, they include a CD disk with easy to follow instructions, mostly just click “yes” when prompted. 

Yesterday was Easter Sunday.  The lodge was having a nice brunch so we signed up to all of us to go.  It was a nice brunch but I was surprised they didn’t have an omelet station, in fact, they didn’t even have eggs, only quiche (and real men don’t eat quiche).  But the rest of the meal was fine, just thought they would have had eggs.

After brunch, the lodge also put on a Easter egg hunt for the kids.  Must have been 25 kids there, they had an area set aside for the little kids and a large grassy yard for the older ones.  Katie was with the older kids but she didn’t have any problems, she managed to get her “share”, even tried to share some of hers with a handicapped kid who didn’t participate. 

Later we headed over to Susy’s house while Mark took Katie to Great America for more Easter activities and to ride a couple rides.  Lorraine and Susy made a good Easter dinner, ham, potatoes, jello, Easter eggs with Red Velvet cake and/or apple pie for dessert.  That was almost too much after our brunch but I managed, even had some apple pie too. 

The speech therapist came by this morning just as I was starting to write this and worked with Lorraine for about 45 minutes.  While she was here, the physical therapist called and made an appointment for later this afternoon.  Then her doctor’s office called to let us know the neurologist doctor had an opening even later this afternoon and wanted to see Lorraine.  This will be our first visit to this neurologist so don’t know what to expect but we will bring all the records from the hospital for him to check out.  The above should give you some idea of what our days will be like, therapist visits every day and doctor visits plus phone calls from the same.  But we are getting the medical attention she needs so I am not complaining for sure. 

This Elks lodge only allows for 14 consecutive days camping in their park but I wrote a letter to them and asked for an extension due to the therapy Lorraine is getting and just heard we can stay until her therapy is completed in early May, yea.  That means we will be here and won’t have to leave for three days every two weeks. 

This park has water and power hookups at each site and it also has a dump station available, it’s close enough that I can use a long, regular water hose to dump our grey water tank every other day and can leave it hooked up when doing laundry too.  But we don’t have enough sewer hose to reach the dump site to empty our black water tank.  This means putting stuff away, disconnecting the water and power, bring in the slides, start the rig and raise the stabilizer jacks.  We then have to drive over to the dump area and empty our tanks before returning to our site and reversing all the above steps, a hassle but something we have to do once a week or so.  But our neighbor happens to have enough sewer hose to reach the dump and I asked him if I could attach our hose to his and empty our tank whenever he is empting his.  So now we don’t have to move the rig to empty either the grey or black tanks, yea. 

The weather has been ok the past week, highs getting into the 70s, once it even got to the upper 80s, very unusually for this time of the year around here.  But we did get a system that cooled us off and even got a little bit of rain yesterday.  They are predicting another system coming in tonight/tomorrow that should give us some measureable amounts of rain them back to mostly sunny days for the rest of the week. 

Again, I don’t have any pictures to add this week although Susy did show me how and she downloaded all the pictures from Lorraine’s cell phone.  She has over 1000 pictures so I really need to go through them and when I do I may make another post just to add some of those pictures. 

But for now, guess that’s all.  I’ll get this posted before the physical therapist comes by, supposed to be in a half hour.

Thanks   Chuck