WE SURVIVED THE HOLIDAYS...JOSH TURNS 21 DAY AFTER XMAS...

Natalie made arrangements to have Josh's buddies come over for his birthday.  She is a sweetheart and Josh is a lucky boy. 

The guys and gals hung out and played Xbox, ate pizza and cupcakes -- just like when they were little...  All of his buddies are home from college.  All Josh said most of the day  was "Wow, I'm 21...I can drink alcohol..."  I'm trying to drive home that he can't drink because of his brain injury.  I have everything written down in his memory book.  Josh spends a great deal of the day reading his memory book.  Eventually I think and hope things will "sink in" and he'll understand what happened.  Every once in a while he'll say, "What happened to me?"  This is a good thing because he's at least realizing that something happened...

Xmas Eve with Natalie and Kendall at Gary and Vonnie's house, friends of the family.  Don't worry...Josh isn't drinking.  We were!! 

Xmas Eve we spent at Gary and Vonnie's house.  We had a wonderful time !  Gary and Vonnie are both incredible cooks and entertainers.  Their house was festive and everyone enjoyed themselves. 

Here's Josh with Lizzy and Rogers.  They had a holiday open house on the 23rd.  They are laughing because I told them to get in the picture with their newly adopted son...

Here's beautiful Bella, Gary and Vonnie's doggy.  She is sweet, unlike my wild animals...

So....we survived the holidays.  We actually had a great holiday.  Christmas Day, we had company -- my girlfriends Molly, Mary, Christina and Josh's trainer, Christopher came over.  We ate and drank and carried on.  Then, we went house hopping - first to Carolyn and Buck's house in Whispering Palms, then to Ellen's for a traditional turkey dinner.  It was fun.  

Before the holidays I had Josh professionally assessed by two teachers from Torrey Pines High School.  They did standardized testing on Josh for two hours to see how he is functioning academically.  I will get the results after the first of the year.  I think he did well.  Josh is such a team player and is eager to please.   After  I get the test results, I will have Josh tutored every day for several hours in the afternoon to keep him mentally stimulated and moving forward.  I hired a behavioral consultant to help me out with this. 

Josh is still an outpatient at Sharp Rehab having physical, occupational and speech therapy.  Christopher works with Josh twice a week at the gym.  He also takes him to the club to work on his "short" game.  I hired a new guy caregiver, Don, to hang out with Josh.  They watch football, play Monopoly, Xbox and pool. 

I have decided that I need to be away from Josh more.  In fact, the more, the merrier.  He is driving me crazy with the "Where's Dad?" thing.  I thought I'd be able to get answers from  Dr. Gardner, but no such luck.  This perseveration thing is maddening and weird. 

Josh's short term memory is improving a tiny bit.  He can remember names now and then and will sometimes really surprise you.  I am really looking forward to getting him in a structured program at home with the tutoring.  As far as the executive functioning thing, Josh is getting a little better.  We went to my girlfriend Devora's house yesterday because her Dad passed away suddenly.  Josh was very appropriate and said he was sorry.  That's a good thing.  At least, he didn't laugh in her face.  But, then this morning when I was telling Josh about the Bhutto assassination in Pakistan, he started laughing hysterically....    

So, that's the news in a nutshell!  Hope everyone had a great Christmas and holiday season!  We miss everyone!  Thanks for thinking of us!!!  Happy New Year!  Here's to a great 2008!!   THANK GOD FOR XBOX!!  Mike, Angie and Tyler, thanks for that guitar game, it is a big hit!  All the kids come over and play it.  Josh still loves the John Madden NFL game, but he'll sit and watch all of Natalie's buddies play the guitar.  It's a fun game.  I am still trying to get the hang of it.  I bet Tyler is good!   xoxo 

 

 

JOSH IS TALKING ABOUT HIS 21ST BIRTHDAY AND IS COUNTING THE DAYS...

I was waiting for something wonderfully monumental to happen before updating the blog, but no such luck.... Josh continues to perseverate about his father...it's getting crazy...  it's very similar to Chinese torture...  you wake up in the morning and think you can handle it, then the constant droning really starts to wear on you... "Where's Dad? Where's Dad? What happened?  Where is he?"  Soon I may be in stripes and someone else is going to have to take my place...

Realizing that I desperately need professional guidance to get me through this mess, I made an appointment with one of the best neuro-psychiatrists in the country.  He happens to have an office in Solana Beach which is great.  Dr. Daniel Gardner has a big laundry list after his name, distinguished fellow, diplomate, American Board of Psychiatry and Neurology, this and that....  For all of you who have faith, please pray for us.   For some reason I can't seem to pray so others feel free to beg, plead and ask for good things...  every once in a while I do say, "Oh dear God, please help me not kill Josh...." 

Josh is now counting the days until he is 21.  Today he'll wake up and with garbled speech he'll say, "Only 17 days until I turn 21..."  I was looking over his shoulder when he was on the computer the other day and he was instant messaging someone and said, "I'll soon be able to drink alcohol in public..."  I tell Josh he can't drink any alcohol with a brain injury.  He, of course, replies, "What brain injury?"   I show him my rendition of that fateful day of March 28, 2007...  "You were partying your ass off at U of A, Josh, drinking tons of beer and doing all kinds of drugs, like crappy bootleg xanax that you bought in Mexico and cheap cocaine, when you passed out, asparated... you were rushed to the hospital where you spent 30 days in ICU fighting for your life on all kinds of life support....  You almost died, Josh! .... "  Josh will say, "Oh, wow.."  Josh understands everything he reads and will ask all kinds of questions.  It's just that nothing seems to "stick".   Hopefully, with time, it will.

Let's see...do I have any good news?  Josh's short term memory has probably improved by a few minutes.  We are still going to out-patient therapies at Sharp Rehab and last week Josh remembered the entire car ride (about 20 minutes) that we were going to Sharp Rehab!  That's a start.  If you ask him what he does at Sharp, he'll tell you he has physical, occupational and speech therapies.  He'll occasionally remember the names of his therapists.  Josh knows that it is December.  He is still obsessed with time and dates... not uncommon for a brain injury. 

Josh continues to go to weight training at the Sharp Rehab gym with Christopher, on Mondays and Thursdays.  Christopher is a guy I hired to work out with Josh.  He's a cool guy, lived in the Land Down Under for a while and has dual citizenship.  He's was a pro-basketball player in Australia and has written a book called "Swimming to Angola...and other tips for surviving the Third World".  He's traveled all over the world and is a fun, adventurous nomad of a guy!   

I have an appointment with a behavioral consultant who works with autistic children.  Hopefully this guy can hook Josh up with various tutors to keep him mentally stimulated.  Josh's behavior is actually not that bad, although at times he'll act inappropriate and start laughing his ass off in public over something that is not funny at all, like an old lady falling or a car crash...   it's that executive function thing ...

Last night Josh's caregiver did not show up, so my girlfriend, Ellen and I took Josh to Scalini's.  We had a great time.  We sat at the piano bar for about an hour after dinner and sang.  Josh even danced...  I have come to the conclusion that Josh does great with lots of people around.   Josh met one of the waiter's daughters and asked her five times in the course of ten minutes what her name was...  He's like Tom in "Fifty First Dates"...

On a good note, Josh can beat the Xbox 360 John Madden 2008 football game which is no easy task.  He'll carefully line up the positioning for the field goal kicker and can kick a field goal right down the middle... he's good.  He'll be downstairs playing Xbox and I'll hear him scream out, "Mom, where's Dad?"  He's good at multi-tasking....  

 We're going to miss NYC and Chicago this year.  Happy birthday to NAHA!  I can't remember how old NAHA is, is it 7 already?  Happy holidays to everyone!  We're trying to get in the spirit.  It's been a tough year for our families between Josh's brain injury and Angie's surgery...  2008 will be better for all of us!  Love to everyone!  Thanks for reading Josh's blog!

Oh yeah, my sweet Natalie is doing great.  She's busy applying to colleges, being class president and running around like crazy... She even has a JOB!!  She's a hostess at the Paradise Grille in Del Mar.  Josh says she's "the hostess with the mostess.." 

 

Chris and Bruce visit from Chicago. Josh's college buddies visit during Thanksgiving Break.

Nat, Josh,  and Chicago cousins, Chrissy and Bruce 

We all enjoyed having Chrissy and Bruce stay with us for the Thanksgiving holiday.   Chris and Bruce went to Sharp Rehab with Josh and observed his occupational, physical and speech therapies.  Bruce quizzed Josh on world landmarks like the Blarney Castle in Southern Ireland and the Sydney Opera House in Australia.  I have all kinds of flashcards and games to stimulate the brain.  Chris and Bruce are pretty good at world landmarks since they have travelled so much.  I was impressed! 

Bruce fixed up Josh's truck which was very nice of him!  He got the back driver's side window replaced from a mobile glass company that came to our house.  That was great.  He also painstakingly washed Josh's truck which was filthy dirty.  Thanks, Bruce!  You're a peach! 

Josh continues to drive me crazy with the "Where's Dad?" thing...  he just won't accept the fact that he's gone...  I think Josh has read the obituary a hundred times over and he still asks, "Where's Dad, Mom?"  I was reading in one of my brain books that sometimes when there is a traumatic event and then a subsequent brain injury that the traumatic event will be erased from the memory for a while until the brain heals itself.  For example, if a child was molested, then grows up and has a brain injury, the molestation is erased from the mind until the brain heals.  Who knows what's up with Josh?  Last night when Josh was asking about his father, I decided to show him a bunch of pictures of Jerry when he was little.  Josh was checking out the pictures and then said, "Mom, I miss Dad and really want to be with him."  Isn't that just pitifully sad???  I tried to lighten up the conversation and said, "Well, Josh, don't kill yourself!"  Josh then proceeds to laugh his ass off for two minutes straight.  He always seems to find humor in things.  It gets a bit embarrassing if we are out somewhere and Josh starts with that crazy laughing....   Yesterday all his buddies came over and they started looking at crazy clips from You Tube and Facebook .  Josh was laughing so hard tears were running down his eyes.  He was hysterical...  His buddies like to rile him up andget him to start with that crazy laughing....  One of Josh's buddies, Shane, says to me, "Paula, can we take Josh out?"  They don't understand that Josh is not the same Josh.  They keep saying, "He looks great!"  It's true....Josh does look great, but he still has a long way to go mentally....  For example, it would be nice if he knew  what he did ten minutes ago...  that's a start....   He continuously asks me, "Mom, when am I going back to college?"  I say, "Josh, do you think you're ready for college?"  He says, "Yeah!"  I say, "Okay, then, tell me what you did this morning..."  He says, "I don't know."  Then, he cracks up laughing for five minutes.  Real college material...  

Chrissy and I were trying to get Josh to figure out what his Facebook email address was and his password.  Josh did manage to remember his AOL email and password but we couldn't get into Facebook.  It's funny how Josh says he doesn't know this or that, but when you prompt him, he'll figure it out.  For example, with his AOL email, we typed in one of his screen names and although he said, he didn't remember his password, he typed it in spontaneously.  It was cool.  I will not tell you what his password is since it is rather graphic....  typical Josh...

Last night Josh was on the computer and sent an IM to one of his girlfriends asking her to have lunch with him.  He told her to call his cell phone.  I get a call this afternoon from Dana saying, "Oh hi Mrs. Mendell...Josh asked me to lunch and told me to call his cell phone...but it's no longer in service..."  Of course, Josh has no recollection of having sent an IM to Dana...  it's all so crazy! 

Today we golfed again at that small par three.  John, the pro, was telling Josh which club to use and Josh, of course, wanted to use the wedge since it was only a 90 yard hole...  Josh thinks he can do what he did before, but he obviously can't...  After arguing for a few minutes, John finally said, "Okay, Josh, use whatever club you want..."  Josh then proceeds to hit the ball 30 yards and cracks up laughing really loudly for a full two minutes...  I'm wondering when the laughter is going to change to frustration...  That's what all the experts are telling me.  I can't wait!

Thanksgiving dinner was yummy.   I cooked an organic turkey !  Josh was amazed that it was Thanksgiving.  He keeps asking if it is summer...  his sense of time is all messed up...  Hopefully soon, he'll stop asking what day it is and what month it is....

 

Josh's buddies visit during Thanksgiving break - Jason, Weston, Mikey, Shane and Dave.  Josh enjoyed seeing all his brothers!

Tonight I let Josh go to Pick Up Stix with his buddies.  They really wanted to take him, so I let them...  I was actually glad to see Josh go off with his buddies, but I warned them not to get any crazy ideas...  They were cool and Josh returned home unscathed....  he had fun.  That was sweet of his buddies to take him, don't you think?

Hope everyone had a great Thanksgiving.  We missed you, Mike, Angie and Tyler!  Hopefully we'll see you soon!! 

 

 

Josh is golfing!!

Why didn't I think of this before???  I enrolled Josh in the "Golf for the Physically Challenged" program at Sharp Rehab with PGA Pro John Klein.  Today was our first day and Josh did great!  We went to an executive course in San Diego called Four Points Sheraton and met several other guys who had brain injuries.  John, the Pro, took Josh under his wing and worked with his balance to get Josh comfortable with swinging the golf club.  First they went to the chipping and putting green and worked on the basics.  

I was extremely happy to learn that Josh does, indeed, have good balance.  Although I was instructed by the Sharp Rehab therapists to bring the gait belt for balance, I soon learned that Josh did not need a belt.  After working with John for a while, Josh was soon chipping and putting on his own.  After practicing for a while, off we went to play our first hole of golf.  Josh did great!!   He got a six on his first hole.  Not bad for a kid who has been in a coma for two months and who hasn't picked up a club in over 8 months.  GO JOSHY!!!!!  We will be coming every Saturday and working with John.  He is  a wonderful guy who is dedicated to helping the "physically challenged" get back in the swing of things.  Thanks, John, you are a class act!!!

It was wonderful to have Josh on the golf course concentrating so hard and listening so intently  to John.  It gave me a break from Josh's constant questioning....  "Mom, where's Dad?"  "Mom, when am I going back to school?"  "Mom, what day is it?"  "Mom, is it still summer?"  This constant questioning is very common with brain injuries.  It is called "perseveration".  After fifteen minutes of the same question, you're ready to reach for the gun.  Josh will be sleeping and will suddenly shout out - "Mom, what day is it????"  It is something else...   the wonderful world of the brain injured.....  

Last weekend we went to the San Diego Brain Injury Foundation meeting at Scripps in Encinitas and Josh won the raffle - a tee shirt with their logo.  After the meeting, Josh said, "I hate these people!"  It cracked me up.  He is so funny.  He truly drives me nuts, but he makes me laugh at the same time.  Whenever a survivor meets Josh and learns that his injury occurred on 3/28/07, they always say, "Wow, he's come a long way.  That is truly incredible!"  This makes me feel so good.  I feel like it has been an eternity!!!  I always let them know about the hyperbaric oxygen therapy and the fact that Josh has had close to 70 treatments!!!!   I know this helped Josh tremendously!   THANKS, MIKE!!

Our biggest challenge is Josh's short term memory.  He will watch an entire Charger game, scream and yell and understand all the plays....then when it's over, it's gone from his mind.  He'll cruise the channels looking for the game when he just watched the entire game from start to finish!!!!  Isn't that amazing???

Josh is on his fifth day of medicine for Alzheimer's.  We are trying it to see if it makes a difference....  Let's hope so.  I understand that Namenda, the drug that Josh is on, has no negative side effects so we are trying it.   I did just learn from a brain injury consultant that there is a natural antioxidant that is supposed to work on short term memory and that is called pycnogenol.  It is a vegetarian sourced antioxidant from the French maritime pine bark.  I will start Josh on this antioxidant on Monday after consulting with Dr. Stenehjem.  I have a brain injury consultant who likes me - Pedro Leon.  He is an extremely knowledgable guy.  He says he'll give me all the free advice I want if I take him to lunch once in a while .... not a bad offer.  I took him to a late Friday afternoon lunch at Los Cabos and we wined and dined and talked for three hours about brain injuries.  He has clients all over the globe....

I have also enrolled Josh in a weight training class on Mondays and Wednesdays at the Sharp Rehab gym.  I hired a guy to work out with Josh - a guy named Christopher who was recommended to me by a girlfriend.  He is pretty cool.  He is a tall guy who used to play pro basketball for some Australian team.  He has dual citizenship and is very interesting and kind. 

I am particularly excited about Josh golfing again!!  We look forward to going next week!  Chris and Bruce are coming for the Thanksgiving holiday.  It will be wonderful to  see them again.  CONGRATULATIONS TO ANGIE for getting her surgery overwith!!!  LOVE TO EVERYONE WHO READS THIS BLOG!    HAPPY THANKSGIVING!
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Josh is extremely happy these days!

Josh is always laughing.  He is so happy these days.  He wakes up happy.  He's happy all day long -- he goes along with whatever I say.  I say, "Josh, go brush your teeth."  He says, "Okay, Mom."   I say, "Josh, go get dressed and get ready for therapy."  He says, "Okay, Mom,"  I say, "Josh, drink this glass of water to flush out your system."  He says, "Okay, Mom."   He is just the most pleasant kid you can imagine.  He's such a team player.   He participates willingly in all of his therapies.  It's interesting...  Pedro Leon, the physical therapist consultant that I am thinking of hiring, says, "Just wait...this will change..."

We continue to write in Josh's memory book every day telling him what day it is and what his schedule is for the day.  Josh still continuously throughout the day asks about Jerry.  "Where's Dad, Mom?"  "Did he really die?"  "Why?"   I even drove Josh to the cemetery, dragged Josh up the steep hill where Jerry's gravesite is  and showed it to Josh.  Josh looks at it and says, "Oh, wow!"  Josh remembered having gone to the cemetery and seeing the gravesite for about half an hour!!  This was a big deal for Josh since his short term memory is normally less than a minute.  Later on that afternoon Josh had no recollection of going to the cemetery.  He would read what I wrote in his memory book and say, "We didn't go to the cemetery today."  It's crazy... 

Josh's new thing is reading his high school yearbook.  He now asks me, "Why aren't I going to college?  When am I going back?"  This is a good thing, isn't it?   It is so strange....sometimes Josh thinks he's still a senior at Torrey Pines and Natalie is 13...  Other times he is "with it".  He knows he is 20 and knows Natalie is 17.  But when Natalie takes off and gets in the car to drive, Josh can't believe she has her license.  "Mom, Natalie is driving and she doesn't have her license!".....   I think with time things will fall into place.

Josh is on no meds at all.  Contrary to what the doctors say about brain injuries, Josh never sleeps in the day.  He never takes naps and will stay up all night if you lethim.  Josh is constantly asking about time.  He'll be sitting on the john and he'll scream out, "Mom, what day is it?  What month is it?  Am I going to school today?"   It's wild.

Josh's speech is still slurred.  He runs all the words together.  Next week we are having more speech therapies than physical and occupational therapies combined.  I told the scheduler at Sharp that Josh needs speech therapy more than anything else.  It is frustrating when he talks and no one can understand him.  He continues to laugh his butt off.   When I tell him, "Josh, I can't understand a word you're saying!"  He just laughs...  I tell him to speak slowly....one word at a time...  

I enrolled Josh in this program called Cognition Ignition which is a cognitive remediation program successfully used in 70 countries as a tool for the enhancement of learning potential.  This guy, David Witkowski, swears he can get Josh's short term memory back.  Josh had one session and I really liked the guy.  He is animated and uses all kinds of different techniques.  The first thing he did was give Josh a series of pictures with dots all over the pages and asked Josh to find squares and triangles.  He said, "Josh, first connect the dots and make a square, then connect the dots and make a triangle."  The dots were not numbered.  Josh breezed through the exercises.  I guess the idea is to remember what to do first.  The exercises get progressively harder...  Then he would give Josh all these cards with pictures on them and ask him to make pairings, such as a knife and a loaf of bread, a saw and a piece of wood.  Josh breezed through this exercise as well.  As the hour came to a close, Josh was getting fatiqued and was messing up....   The method used is called Feuerstein Instrumental Enrichment.  Everything is comprised of paper and pencil tasks aimed at specific cognitive goals.   I figure this method has to have some validity since it has been translated into 29 languages.  Who knows?  The guy had a big ad in the San Diego Brain Injury Foundation newsletter.  I'll try it.  Josh doesn't seem to mind.  The guy asked him if he had a good time after the session and Josh said, "Yeah, I did."....   

We're continuing with hyperbaric oxygen therapy.  We have two sessions next week.  We're trying everything! 

Hopefully next time you see Josh you'll be amazed as his improvement! 

Oh yeah, I forgot to tell you guys about the wildfires!  How horrible was that???  We survived the fires unscathed, but we did have to evacuate.  I knew we were in big trouble Monday morning when smoke and soot were coming our way.  There was lots of soot which came into the house through the door and window cracks.  The air quality sucked.  We immediately got our stuff together and checked into the Beach Terrace Inn in Carlsbad on the water where the sky was blue and the air was clear.  I grabbed my wedding album, my mom's wedding album, some pictures of the kids and family, my insurance policy and estate file, a suitcase full of piano music and off we went.  Josh did amazingly well.  We stayed in the hotel three nights.  I was thinking, "Gosh, on top of all the crap we're going through with Josh, our house might burn down....I guess that's par for the course...."   We were lucky! 

 

   

Josh survived his four day stay at the Howard House

Memory impaired Josh can still play video games.  Can you see what it says in the lower left hand corner of the video screen?  1st!  Not bad, Josh...  Josh will play video games for a few hours at a time.  His fine motor skills are pretty good and video games work on your eye-hand coordination.  The other day Josh was sitting on the edge of the chair playing a video game when he crashed to the floor.  Of course, Josh was laughing his butt off.  He thinks everything is funny these days...  I wish his gross motor skills would improve faster.  It is very difficult to get Josh off the floor.  His body just doesn't know what to do... 

Josh survived his four days at the Howard House, but came home with a terrible cold.  I know he was stressing in there because he called me several times a day saying, "Mom, pick me up now..."  I told Josh to read the letter Natalie wrote to him in his memory book which said where he was staying and where I was going.  The staff at the Howard House is very kind.  Currently there are four guys living there.  When I went to pick Josh up one of the guys says to me, "Hey, what's your husband's name?"  I said, "My husband's name was Jerry."  The guy says, "Oh, did he pass on?"  I said, "Yeah, he did."  The guy says, "You know,  I only know three women named Jerry.  Nice to meet you, Jerry."    I said to him, "No, my name is Paula.  My husband's name was Jerry..."      He says, "Nice to meet you, Jerry.  Hope to see you soon."    Oh boy.....  

Another guy reminded me of Pee Wee Herman.  He was adorable, but had the mentality of a four year old.  He was so happy and animated.  He comes running up to me and starts hugging me and stroking my arms....  I didn't want to be rude, but he startled me.  I learned his name was John and that he now had an infatuation with birds!   He used to be a mechanical contractor with Solar Turbines and was in a violent car crash.  He and his wife were drunk.  She died on impact.  How sad is that!     I must say I never thought I would be a part of the brain-injury world. 

Josh was very happy to be leaving the Howard House.  He told me in the car on the way home, "Mom, thanks for coming to get me."   The next day, Josh says, "Mom, where did I sleep last night?"  I told him he slept in his own bed at home.  The memory thing continues to haunt me.  I think Josh knew he was some place different for a few days... 

We had an appointment with Dr. Stenehjem just before the Catalina trip and he thinks Josh is making slow, steady progress.  Dr. S said I could stop all medications for Josh, but not to do so until after the trip.   I asked Dr. S about a consultant that I was thinking of hiring to help get structure in Josh's life.  This guy, Pedro Leon, is a physical therapist that started a consulting business for families dealing with brain injuries.  He came to the house and did a formal assessment of Josh.  It took him three hours.  I need to read his report and all the paperwork which he sent me.  Dr. S said Pedro was excellent and would get structure in Josh's life.   He'd screen and train all the people I need.  I want to hire a guy to take Josh to the gym a few times a week and take him to the recreational therapy programs that Sharp has, like golf for the physically challenged...

I had Josh's hearing tested by Dr. Jackson, an ENT man.  Josh has  moderate hearing loss in both ears.  The right ear is worse.  He cannot hear some higher pitches.  I was wondering why he was constantly saying, "What?" in a very high tone.  The plan is to wait 6 weeks, have his hearing re-tested and then get hearing aids.  Last night when Natalie was talking to Josh and he continuously said, "What?" in that crazy high pitched voice, Natalie says, "Mom, I can't wait until Josh gets those hearing aids..."  It does drive you crazy.  I just hope Josh's hearing is not a degenerative thing.  I wouldn't think it would be... 

Today we have three outpatient therapies at Sharp.  This morning I am having a reflexologist caregiver come over to work on Josh.   Hopefully today Josh will make a monumental breakthrough!  That would be wonderful.

   

 

I AM LEAVING FOR CATALINA ISLAND THIS MORNING! NO JOSH FOR FOUR DAYS!

After more than six months of caring for Josh every single day, I am taking off for Catalina Island this morning to celebrate a girlfriend's 60th birthday!  We're going to the jazz festival.  I can't wait!!!  I need a break so desperately.

Last night Natalie and I took Josh to the Howard House in Escondido, a private home run by the San Diego Brain Injury Foundation.  There are only four patients there and it seems like a loving, caring place.  The director, Beth, is young and beautiful, kind and compassionate...  So, how bad can this experience be for Josh?  Beth is willing to take Josh to his three therapies at Sharp on Friday and Monday.  I think it's a good thing.  It's better than leaving Josh at home with caregivers who will let him eat all day.  At the Howard House, Josh will have structure which he needs.

We have a memory book for Josh which we write in every day which states what we're doing for the day.  I make Josh bring this with him when we get in the car so he can refer to it when he asks me 100 times where we're going.  Natalie said to me yesterday that Josh has a "17 second memory".  She says, "I timed it, Mom, and Josh can remember things for 17 seconds." 

I'll update the blog when I get home and tell you all the latest on Josh's most recent appointments with Dr. Stenehjem and his ear, nose and throat man, Dr. Jackson...

Josh looks great and is pretty good with his fine motor skills.  He can still play video games.  I'll put photos on the blog next time. 

See ya and thanks for reading the blog!

 

 

 

 

 

Auntie Helen, Uncle Mark and Carrie visit from Chicago and Marco Island

Josh who still "lives in the moment" had a great time with Uncle Mark, Auntie Helen and Carrie.  Josh was happy to see everyone.

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Josh particularly enjoyed himself with Uncle Mark. 

Uncle Mark was great with Josh.  He came with us to Josh's acupuncture appointment and spoke with Elisa, Josh's acupuncturist about the ancient Chinese remedy. 

Josh is a team player and participates willingly in his treatments.  These points on the ear stimulate the brain.  We're trying to get Josh's short term memory back.

You can see the acupuncture needles in Josh's head and hands.  They don't hurt once they are placed appropriately in the right spot.  Josh is a great patient!

Hopefully something miraculous will happen soon because I am getting weary...  Unfortunately there is no magic pill to get Josh back to what he once was.  The good news is that we started speech therapy and hopefully will get in 50 sessions before the end of the year.  I am pushing and fighting for what Josh is entitled to under our health insurance plan.  Everything is a fight.  I walked into Sharp a few days ago and was told by one of the administrators that I would have to start paying for his outpatient therapies --  $140 an hour times 9 times a week  --  $1260 a week.  Wow...  I was upset.    After speaking with her, I made several phone calls and learned that this was not correct.  So all is good at the moment.  I am pushing for those 50 hours of speech therapy before the end of the year.  I think Josh is going to do very well with his speech therapist - a guy named Lance who is very cool and relates well with Josh. 

Physically, Josh is coming along.  His balance is improving.  He is still a fall risk and needs supervision around the clock.  I am sick of sleeping on the air mattress in his room, but everytime I try to sleep in my own bed, the dogs follow me to my room and Josh yells for the dogs over and over until you want to shoot yourself.    "Ruffy, Daisy, Ruffy, Daisy, Ruffy, Daisy."  So, I just give in and sleep on the air mattress. 

Elsie, his nurse, is leaving on Tuesday morning.  So, Josh will be getting a new caregiver.  Hopefully she will be as good as Elsie.  Maybe she will be better!  That would be great.  I need a lucky break - someone firm, but kind, someone who is willing to do some exercises with Josh both physically and mentally.  Lance will be giving Josh homework to do.  He needs mental stimulation and structure.  I get upset when I think of him just hanging out all day when he doesn't have therapies and walking to the refrigerator every ten minutes.  What kind of life is that for a 20 year old kid?   I looked into the Napa Institute in Los Angeles which is a great place that provides 6 hours of intensive physical therapy a day.  No place around here does that.  I spoke at length with the owner whose daughter has a brain injury.  He said, "You will see results.  The program consists of 6 hours a day in a gym for 15 straight days  with skilled physical therapists.  His mind will improve and his body will definitely change..."  The problem is it is out-patient and I would have to live in the corporate living quarters.  Caregivers are not provided.  After thinking about his program, I decided that I could get the same thing here.  I'd just have to do more running around. 

Josh still has severe short term memory deficits.  I need to really pick Dr. Stenehjem's brain and ask specific questions next time I see him.  I want to know what I can expect.  I want to be reassured that he will improve and get better.  The big mystery and incredible source of horrible anxiety for me is HOW MUCH BETTER....  It has been six months since the injury.  They say to give it two years...    I am trying to stay positive, but sometimes, like today, I am overwhelmingly sad.

On a good note, Carrie took us to her friends' restaurants, Savory in Encinitas and The Lodge at Torrey Pines.  We brought Josh with us and he did great!  He still has his gourmet tastes.  Carrie's friends, especially Jeff, were wonderful and hospitable, generous and kind.   They really roll out the red carpet for Carrie! 

I want to thank Carrie for bringing Josh a monogrammed Four Seasons robe.  Hopefully when Josh gets better, we can all laugh about how he thought he was at the Four Seasons when he was at Sharp Rehab...  Josh is such a character - a high roller like his Dad.  Also, Carrie, thanks for my Kiehl's products and Natalie's beautiful headband!  

Also, thanks, Uncle Mark, for going through Josh's football and baseball cards and picking out the pricey ones!  Auntie Helen, thanks for playing Black Jack with Josh and hanging out.  We had fun!  Natalie really enjoyed herself !

 

       

 

 

Josh is home and we're all adjusting...

The Lawrence family visits Josh...  That's Josh's buddy, Kyle, on the right.  He called 911 on that infamous morning.   

Josh is happy to be home after spending over five months in hospitals.  He has no recollection of those five months due to post-traumatic stress amnesia....but I suppose that's a good thing.  Who wants to remember being on live support and fighting for your life?

The first thing Josh did when he walked into the house was say, "Wow, this looks just like our house..."  I said, "Josh, look around...that's a picture of us on the wall."  He then says, "Wow, this IS our house."  How brilliant is that! 

We're getting into the routine of being an outpatient at Sharp Rehab.  He has about fifteen hours of out-patient therapy per week.  It takes a long time to get it together to go out the door and be on time.  It's S L O W.  To make a 9 a.m. appointment, we have to get up at 7 a.m.  We have to get Josh out of bed, on his feet, to the bathroom, to the kitchen table for breakfast, back to the bathroom, into the bedroom to get dressed, then down the stairs and into the car.....     I sleep on an air mattress in Josh's room so I can help him get up in the middle of the morning to use the bathroom and also to keep a watch so he doesn't fall.  He has already fallen twice on the watch of a clueless caregiver.  Caring for Josh is MAJOR.  I feel old and tired...

Elsie is the best nurse and caregiver anyone could ask for.  However, she can't work 24/7 with no breaks.  She sleeps on an air mattress in the family room, close by.  She is extremely efficient and helpful.  She took a few days off and we had this clueless caregiver that claimed she was a nurse with experience in brain injuries.  We soon learned that this was all untrue.  She was pathetic.  I was wondering why she would just kind of stand by and let me do everything.  One morning we were on our way to therapy and I noticed Josh's knuckles were bleeding on both hands.  I knew he had fallen.  I confronted her and she says he slipped when they were walking down the stairs.  She also said, "He pushed me and I am more injured than he is."  Josh was holding his shoulder and I looked under his shirt and noticed that it, too, was bruised and bleeding.  I was livid!  We arrived at Sharp Rehab and I had the occupational therapist check him out thoroughly.  She said he was just a bit swollen, but nothing was broken. 

Later on that evening, I went out with some friends and Natalie was home doing her homework at the kitchen table.  Natalie calls me and says, "Mom, Josh wants to use the bathroom and the caregiver is asleep on the couch...."      So, needless to say we got rid of that gal.  Elsie is back and we're thankful!  I think the plan is to have Elsie 4 days and another gal named Celeste three days.  We'll see how everything works out.

I am looking into other options for Josh such as a place called Learning Services in Escondido which is a more structured environment specializing in integrating brain injured patients back into society.  However, that place was pretty low level.  I checked it out and it was so overwhelmingly sad....   There is another place called the Howard House which I will check out.  Josh has only been home less than 2 weeks, so we have to wait things out and see how he does.  It is just so much work, even with a full time nurse! 

I can't wait until Josh starts speech therapy.  He needs it so badly.  He slurs all his words together and talks so fast.  It is very difficult to understand him.  Yesterday when I got home, Elsie said Josh answered the phone which was a first!  I looked at the caller id and noticed that Joyce had called.  Of course, Josh has no recollection of the conversation, but Elsie said they talked for about 5 minutes!  That's a start...but I am sure Joyce had no idea what he was saying.  I can understand him because I am with him so much.  Hopefully with time and therapy his speech will improve.  He reads well and understands.

Auntie Helen, Uncle Mark and Carrie are coming to visit.  That will be fun.  Josh and Natalie will really enjoy that.  You guys are definitely staying in our house.  Uncle Mark and Auntie Helen can sleep in the master bedroom since I sleep on the air mattress in Josh's room which believe it or not is comfortable.  Carrie will sleep upstairs in the guest room.  So that's settled.  Also Gina Davis is having a fundraiser at the Four Seasons Aviara so I got us tickets to that event.  It's called See Jane and it's always a blast.  They'll be comedians there and you'll get to meet Gina Davis.  She is quite cool! 

JOSH GOES HOME AFTER MORE THAN FIVE MONTHS IN HOSPITALS!!

Josh poses with Ed, one of his favorite nursing assistants as he is being wheeled through the garden and to the car.  Josh is through with sleeping  in this place.  He'll sleep in his own bed tonight after sleeping in hospital beds for more than five months!  How about that one?   We're not through with Sharp Rehab....we'll be back for outpatient therapies on Tuesday.

Josh poses with Joan, his nurse and nursing assistants as he is wheeled out of the hospital.  The gal with the light blue pants and black top is Elsie, the nurse we hired to take care of Josh at home.  She is darling.

Josh is so happy to be leaving the hospital and poses happily with Joan, his nurse.  All his stuff is packed up and ready to go.

 

HOME AT LAST!

On Saturday, September 1st at 11:00 a.m., we left the hospital and headed home with our new nurse, Elsie.  Josh immediately perked up as we got closer to our house.  He recognized all the freeway signs and was so happy to see the Del Mar Heights Road exit and the Via de la Valle exit.  He was talking non-stop...reading all the freeway signs outloud as we got closer and closer.  I said, "Hey Josh, which way do we go?"  He said, "Take a right on Via de la Valle."  I said, "Which way is that east or west?"  He says in a sarcastic tone, "East."  Josh knows where he lives.

We get home and get Josh up the stairs.  That was a bit of a struggle because his sense of space is still off and he doesn't always put his feet flat on the stairs... When he walked into the house, he says, "This looks just like our house."  I said, "Josh, look at the picture of us on the wall..."  He then says, "This IS our house."  He was laughing.  The dogs were barking and Josh was happy!! 

I had actually gone grocery shopping and stocked up the frig for the big event.  Josh hung out in the family room and watched ESPN and the Padres baseball channel all day.  He yelled out Ruffy and Daisy a thousand times... We sat at the kitchen table and had lunch and dinner.  Natalie was happy that the frig was finally well stocked.   She had her friends over and they made turkey sandwiches and ate watermelon.  

I had filled Josh's prescriptions on Friday night.  He is down to two medicines only -- an anti-seizure pill and Adavan.  He is supposed to take one of each every eight hours. I must say that Dr. Stenehjem did an excellent job in weaning Josh from the morphine and all of his other medicines.  Josh was on a laundry list of meds at one time.  Slowly and skillfully Dr. S weaned him from the opiates, the beta-blockers and the blood pressure medicines.  Thanks, Dr. S., you're the best!  You're fine-tuning Josh.

I decided to skip the mid-day dosage of Adavan the first day.  Then, it was 11:00 p.m. and Josh was wired.   We finished watching the USC football game and Josh was reading every score on the screen.  He said he wasn't tired and wanted to stay up.  Elsie and I were exhausted.  We finally got Josh in bed.  We all slept in his room the first night.   I bought a couple of air mattresses for convenience.  You can put them anywhere and they're pretty comfortable.  We made it through the first night.  Josh was unscathed!  He is still a fall risk and needs supervision 24/7... the joys of a brain injury.   As time goes on, he'll get steadier and stronger.  I just hope he stays as happy as he is.  He is so sweet and agreeable.  He's transformed!!!   I imagine as time goes on and he continues to wake up cognitively, he'll become frustrated, especially with the short term memory limitations.  You can only take one day at a time. 

I am happy to be home.  I am thrilled to have found Elsie.  She is efficient and kind -- extremely attentive.  I told her Josh is her only concern.  His safely and well-being come first.  I found Elsie through a service which was started by a gal who used to be the head rehab nurse at Sharp.  What more can I ask for! 

On Sunday, we went to hbot.  Josh was in a great mood.  Elsie, Josh and I went out for submarine sandwiches after hbot.  Josh always comes out of the chamber starving as it burns through your blood sugar quickly.  I notice that Josh is no longer acting wired and crazy after hbot.  He used to confabulate amazing stories about this and that - watching fights and insisting on going to supporting events.  Now, he gets out of the chamber and he's pretty cool...   I hope that continues.   

Tomorrow we start outpatient therapy at Sharp.  I think things are looking up! 

   

 

East Coast Cousins Bob, Lora, Al and Robert visit Josh

Josh looks pretty pale next to Bob.   

Josh shows off on the treadmill while Bob, Lora, Al and Robert watch.  Here's Josh and Erin, PT, working out at the gym at Sharp.  Josh kept pressing the button to speed up the treadmill.  Erin had her finger on the off button and finally had to shut off the machine...  She was afraid Josh would get slammed into the wall.  Josh was in a great mood. 

Bob was talking to Josh about golf and who had the longest drive.  Josh, of course, said he did and that he could hit the ball 300 yards.  They talked sports.  Bob had some pretty good advice for me.  He said, "Forget about watching movies, put on the games, watch sports tv...this is what Josh is all about... make Josh read the sports section, have him check out the standings...everyday."  Bob grabs the newspaper, opens it up to the sports section and has Josh read the standings.  "What place are the Padres in, Josh?"  Josh studies the tiny print for a minute or two and replies, "second place."  (Padre fans, this was several days ago...)  "Who is in second place, Josh.?"  Josh says, "Arizona Diamondbacks."   Bob says, "Hey, I think the game is on now.  Put on the game. So, we put on the game and watched the Padres. Josh was into it.   So, now when I go home for the day, ESPN is on or Padres baseball.  Good advice, Bob!

Bob and I took Josh for his hyperbaric treatment on Tuesday in the convertible.  Josh did well.  He gets a little wired and crazy after the treatment.  After we got back to the hospital, Josh says, "Hey, Mom, where has Dad been?"  Oh boy....  All these thoughts come rushing into his head and he gets a bit discombobulated after hbot.  I said, "Josh, Dad died."  Josh starts laughing hysterically like I was nuts...  Then, I started laughing and we left it at that...  

Speaking of people getting discombobulated after hbot, I have seen little kids come out of the chamber and literally bounce off the walls.  One kid came out of the chamber, walked over to a glass partition, put both hands on the partition and started shaking it violently.  They have all this crazy energy.  Then, they settle down.  I was thinking of going into the chamber, but after a treatment, I might get out and choke somebody.  Then, I'd go to jail and Josh would be out of luck...  Actually jail might be more fun than this...

Josh had his first acupuncture session at the hospital and he did really well.  He was a real team player and was very aware of what was happening.  He is so agreeable these days...  During the treatment, he said, "How many needles do I have in me total?"  Elisa, the acupuncturist, said "16 needles."  Josh says, "Wow...how many do I have in my head?"  Elisa says "4 on your scalp."  Elisa told Josh she was going to turn the needles and stimulate various points on the head.  Josh says, "okay".   He's so incredibly sweet...the new and improved Josh!  

I was very impressed with Elisa.  She said Josh was very healthy and had a good constitution.   I like the fact that acupuncture restores balance back to the body and influences a life force that flows along various meridians which are channels of energy that run longitudinally in the body.  We obviously want to increase Josh's brain function.  We know that with pain acupuncture works by increasing the brain's production of natural painkillers called endorphins. We'll get Josh's yin and yang  back on track...   After the treatment, I noticed that Josh was more aware of his surroundings.  He started asking a bunch of questions... He looks out the window and says, "What building is that?"  I tell him it's part of the hospital and he nods.  He says, "What does 'que te mejores' mean?",  looking at the poster on his wall that his Spanish professor put together that all the kids signed.  I tell him it means get better.  He nods.  He seemed pretty peaceful and accepting.   That's a good thing....

Josh is now off of all morphine as well as the anti-Parkinson's drugs.  The anti-Parkinson's drugs were making him irritable.  Who needs that?  Today we have a meeting with Dr. S and the full staff.  I'll keep you posted!

  

No more wheelchair van for Josh. He prefers the Mercedes convertible!

Monday, August 13, 2007

Today  we went downtown in the convertible for Josh's oxygen treatment.    We practiced with Erin, his physical therapist, getting Josh in and out of the car.  Josh did great!  We walked to the car, got in and drove off.  Josh sat next to me and checked out the scenery.  He looked a bit confused, but did extremely well.  He asked where we were going and I told him, "We're going downtown for an oxygen treatment."  Josh says, "Okay".  He's pretty agreeable these days....

Once we arrived at San Diego Hyperbarics, Bob Sands had an entourage of doctors there.  Bob is so thrilled with Josh's progress.  He boasts about Josh to all his colleagues and they wanted to see for themselves "the wonder boy".  I met Dr. Cummins who spoke to my brother, Mike, several times when Josh was in a deep coma at University Medical Center in Tucson.  He is doing his fellowship in hyperbaric medicine at UCSD.  Mike had called Dr. Cummins a few times to see if they would get Josh in a hyperbaric chamber at UCSD.  UCSD would not treat Josh as traditional hospitals do not use hyperbaric oxygen therapy for anoxic brain injuries.  Dr. Cummins wanted to check out San Diego Hyperbarics since he had never been there.  I shot the breeze with Dr. Cummins when Josh was gettting his treatment.  There were two other doctors present when Josh got out of the chamber.  They all watched as Josh stood up and walked to the chair.  Bob gave Josh a bottled water and he guzzled it down.  Bob says, "You don't mind, Paula, if I tell these guys about Josh, do you? "  I said "No, I don't mind at all."  Bob tells the guys about Josh being in a coma and coming by ambulance for his oxygen treatments in early May.  He tells them how he progressed from coming in an ambulance to coming by wheelchair van.  And today, Josh walked into the place! 

Josh was sitting in the chair, taking this all in....  Josh then says, "When do I get my treatment?"  I said, "Josh, you just had your treatment..."  Josh looks a bit puzzled.  I tell him not to worry about a thing that he is just having trouble remembering things.  Everything will be okay in time.  We walk out of the place, get in the car and head back to Sharp Rehab. 

It's interesting.  Once Josh is standing up and gets his balance, he starts walking really fast.  I am trying to break him of the habit of learning forward with his upper chest.  I constantly remind him to pinch his shoulders back and look up so as not to fall forward.  He's getting it.  Once we arrive back at the hospital, Josh gets situated in a sitting position in his bed and tells me to call room service....he's hungry....   After I call the kitchen to order Josh's dinner I say, "Hey, Josh, did you enjoy riding in the car today?"  I was expecting him to say, "I didn't ride in any car today."  Instead, Josh says, "Yeah, I did."  I say "Josh, you remembered!  That's great!"  Josh looks at me like I am crazy and says, "That was only ten minutes ago, why wouldn't I remember?"

  

Josh gets a visit from Daisy ...

Sunday, August 12, 2007

Today I had the brilliant idea of bringing Daisy to visit Josh...so off we went.  Daisy is not the sharpest tool in the shed and I was afraid she would jump out of the car as we sped down the freeway.  But all went well.  She made it to the hospital unscathed and Josh was thrilled to see her! 

He was pretty happy for a while, but then all he said was, "Mom, let's go.  Mom, let's get out of here.  Let's go HOME."  That was pretty sad.  Finally I had Natalie leave with Daisy.  She was two minutes gone when I said to Josh, "Hey, Joshy, did you enjoy seeing Daisy today?"  Josh says, "I didn't see Daisy today...."  I asked him the question hoping he would remember.  This short term memory thing is killing me.  I mean it's bad.  It's worse than "Ten Second Tom" in 50 First Dates with Drew Barrymore.  At least Tom was articulate and could walk and take care of himself....       It has to get better.  Dr. S warned me not to "test" him like that.  But, it's hard not to.  You just want everything to be okay.  You want to see a monumental breakthrough.  But it's not like that...  "it's not a sprint, it's a marathon."  I am truly sick of that statement and actually it is not even true.  It's not a marathon.  It's more like a long journey with crazy detours and mazes which lead you down paths of despair and anquish to test your endurance...  it's hard to stay positive ...

Shortly after Natalie left with Daisy, Josh fell fast asleep...so I zippered him up in his Posey Bed and left.  He looked beautiful and peaceful.  I hope he heals while he sleeps...  They say the brain heals while you sleep.  

I'm ready to go to Bora Bora... 

 

 

I am just beside myself with grief. 

 

Josh laughs so hard tears roll down his eyes!

Mike Nunez and Josh share a laugh.

Tuesday, August 7, 2007

Mike Nunez, Reliable's #1 salesman, came to visit Josh today.  He started telling Josh funny stories about Reliable Pipe and Josh laughed so hard tears rolled down his eyes.  Mike was making fun of all of Reliable's employees and Josh thought it was hysterical...  I haven't seen Josh laugh like that since the accident.  They say laughter is the best medicine!   

Cathy and Zach visit Josh

Monday, August 6, 2007

Cathy and Zach, our Chicago cousins, arrived in town last Thursday.  This picture was taken yesterday in Josh's room at Sharp Rehab.  Zach went to the baseball game with Natalie. 

Josh continues to make slow, steady progress.  Physically he is doing pretty well.  He is walking alot more and is pretty steady on his feet. 

On Saturday, on the way back from hbot while he was in the wheelchair, Josh unbuckled his seat belt, went to stand up and went down head first in the van.  Luckily he caught himself with his left arm and only scraped his knee and jammed his left hand.  He was laughing and said he was okay but I was a nervous wreck asking him repeatedly if he hit his head.  Fifteen minutes later, Josh had no recollection of even falling.  He says, "Mom, what happened to my knee?"  This short term memory thing is killing me...  

In Josh's case, this short term memory loss is due to damage suffered to the hippocampus.  Earlier in the day, while Josh was in the oxygen chamber, I was reading one of Bob Sand's books called The Mind and the Brain, Neuroplasticity and the Power of Mental Force by Dr. Jeffrey M. Schwartz and Sharon Begley.  They describe the hippocampus as an "unassuming little structure" involved in the formation of memories.  The back of the right hippocampus stores a mental map of the environment.  For example,  a person walks into Sharp Rehab Hospital and knows they are in the hospital.  Josh does not know he is in the hospital because that part of the brain that stores a mental map of the environment took a hit when he was without oxygen.    Hopefully he will get it back with time because new neurons can grow in the hippocampus.  It is called neurogenesis and newly generated neurons are associated with the ability to acquire memories.  So, there is hope for Josh.  Some study was done with mice which showed that new neurons could grow in the hippocampus as a result of mice exercising on a wheel in an "enriched" environment, i.e., mice that were not merely placed in a cage but in an outdoor environment with trees and plants.  So, maybe we'll put Josh on an exercise bike in the great outdoors and see what happens....  

Zach, Cathy, Josh and I played Texas Hold 'Em a few days ago and Josh won several times.  The only thing is Josh has lost his "poker face".  If you deal him a couple of aces, he yells out "Oh, wow!!"  I'll have to bring Josh one of his treatises on the psychology of playing poker...   

 

Josh gets his cast off, hopefully for good!

Friday, July 27, 2007

Josh got his cast off yesterday.  The left arm is pretty straight now.  His fingers are still a bit stiff and he does not have the mobility that he has on the right side, but he's getting there...  They made a splint for Josh to wear at night when he sleeps so that the arm does not revert back upward.  The OTs work with Josh to strengthen the left hand and get more dexterity in the fingers by doing various exercises such as reaching up with the left arm and picking up round pegs with the fingers of his left hand and placing the pegs in holes.  It's a struggle for Josh to reach upward with this arm, but he cooperates most of the time.

We had another one of those full staff meetings on Wednesday and Josh got rave reviews again from all the therapists. Josh is "waking up" more each day and constantly says he wants to get out of there.  Yesterday he says, "Mom, did you bring the car keys?"  I tell him yes.  He says, "Good, then I am riding home with you...."  I tell him he has to be steady on his feet first and safe before he can leave.  He pleads with me...  "Mom, don't make me cry..."  Oh God, how pitiful is that?  He is so childlike sometimes...

On the other hand, the day before, my buddy Tommy from NYC came to visit Josh and they played Texas Hold 'Em and guess who won all the chips?  Josh can still play cards and he's pretty good, too.  He's a real guys' guy and enjoyed himself. 

Josh's short term memory is shot...  Dr. S says it will get better.  Josh can't remember what he did a half hour ago and certainly has no recollection of yesterday.  We've been to HBOT over 40 times and every time we go, Josh asks where we're going.  When I ask him if he's ever been to HBOT before, he always says no.  Then once we get there, he laughs and jokes with the guys working there.  This short term memory thing is scary...  everyone tells me he'll improve, it just takes time.  I hope time heals Josh's wounds...

The speech therapist made Josh a memory log.  He is supposed to write in it every day, the same old thing.  My name is________.  (He always gets that right!   Yeah, Josh knows his name.)  Today is __________.  (You're supposed to write, the day and the date.  Half the time Josh doesn't know the year.  He'll say 2006 or 2005....  I will say that I don't even know what day it is half the time.  )  I am at ___________.  (He's supposed to write Sharp Rehab Center.  Various responses from Josh when I ask him where he is:   "At Earl Warren"  (his junior high school)  "At the dentist's office"  (???)  and my favorite response of all...   "At the Four Seasons."   My high roller son thinks it's room service that brings him his meals.  When the phone rings, he says "It's room service."   He must really be starving if he thinks hospital food is Four Seasons cuisine... 

Last night we were hanging out in Josh's room when he suddenly becomes so happy to see some guy walking past his room.  "Hey Fritz", Josh yells.  "Fritzy...Fritzy.."  This guy looks like Josh's buddy Fritz who went to UofA.  I tell Josh that that guy looks like Fritz, but it's not.  "Yes, it is, Mom. "  Josh does that a lot.  He'll see someone and it will spark a memory.  He'll see an oriental guy and says it's Lester's son.  Lester is one of the golf pros at Lomas who is oriental. 

I am reading a book called Where is the Mango Princess? which is a journey back from brain injury written by a woman whose husband suffered from a TBI.  Jean, the head ICU nurse at UMC in Tucson recommended this book to me.  It is pretty amazing what this couple went through.  The brain injured husband would ask his wife "Where is the Mango Princess?"  He would also insist he was at his law office and that the fax he was sending was not going through.  He would yell and scream and call everyone f'ing idiots.  He also masturbated incessantly and was a raving lunatic....   so I guess I don't have it so bad. 

I finally went to the San Diego Brain Injury Foundation meeting last weekend and was moved to tears.  The membership consists of survivors and caregivers.  After seeing some of those courageous survivors and their incredible zest for life, I could barely speak.  I met a guy who was the victim of gang violence.  He had the crap beat out of him with a baseball bat.  His head shook like a bauble head toy.  I met a guy who was shot in the face for $15!!!  He owed some guy $15 and didn't have the money, so the guy shot him!  There were people who had strokes, car accidents, sports injuries, had fallen off of ladders...you name it.  They all stood up, one by one, and told their stories.  Everyone was kind and wonderful.  There was a table set up with all kinds of information and resources.  The number one complaint from everyone was short term memory issues.  They have resources and programs for this problem, so help is out there. 

I met a young lady who had suffered from a TBI when she was in a car accident.  I hired her part time to be a caregiver for Josh and keep him company at the hospital since I am getting so burnt out.  She is a college student and needs to do an internship at the Brain Injury Foundation.  She is upbeat and seems great.  She starts tonight... she'll do some speech therapy stuff with Josh, have him read and write a bit...she has an assortment of exercises for him to do...  Hope it works out.  I know she is a compassionate person -- she gets her elderly dog who can barely stand up pool therapy....

      

 

Josh is being tested by Dr. Hill, the neuropsychologist at Sharp

Friday, July 20, 2007

Today Josh was tested by Dr. Hill, the neuropsychologist at Sharp.  When I walked into Josh's room, Dr. Hill was reading various passages to Josh and asking him questions afterwards to see what he understood.  You really had to concentrate.  My head was spinning as I listened to Dr. Hill read all these short passages, then ask questions for comprehension.  Josh did pretty well.  Dr. Hill would say things like...."A man walks into a hotel lobby with a rope in one hand and a hammer in the other hand.  The clerk asks the man what the rope is for.  The man states that the rope is his fire escape.  The clerk then states that the hotel charges extra for guests that bring their own fire escapes." (rather ridiculous passages, I'd say...)  Then, Dr.Hill would ask Josh if the man was carrying a suitcase when he walked into the lobby.  Dr. Hill also tested Josh's hearing and eyesight by doing various exercises.  He also had Josh read various passages outloud,  do math problems and write simple sentences.  Josh is definitely a team player.  A couple of times I just got ridiculously silly and had to restrain myself from laughing hysterically. 

Cindi, Josh's OT, had Josh's left arm re-cast for a third or fourth time (can't remember now).  This time they really straightened out Josh's left arm and it was rather painful for him.  Josh was making crazy faces at Cindi as she straightened out his arm.  Cindi would say, "Josh, why are you making those crazy faces?"  Josh says, "I am showing you my pain...."  He's comical.  I think this is the last time they are recasting Josh's arm.  The botox is kicking in and he is getting more mobility in his fingers.

Last weekend Kristin came to visit Josh.  He remembered her, was happy to see her and was asking about her other sisters.  Josh then tells Kristin he had breakfast with Russ at Einstein's that morning....  That confabulation thing again.... 

Speaking of confabulation, Josh was insisting yesterday that he had another therapy session and was insistent that we go to the gym...  I mean insistent, yelling and carrying on, cursing...  I wheeled Josh around the hospital grounds, then went back to his room.  He was still carrying on to the point that several nurses came into the room to try to see what was up...  Finally, I put on the movie, Happy Gilmore, and he settled in.  Cool, calm and collected, finally....   Gosh, I have so much to look forward to when Josh comes home...  He better get everything rearranged in his brain and become more reasonable.  I hope this confabulation thing passes because I WILL SURELY GO MAD!  I finally took off a day last Thursday and went to the races.  It felt good to forget about this whole mess for one day...  I am burnt out and need a break...

Josh gets mad at Natalie alot. When she doesn't do what he wants, Josh swears at her and gets her upset.  When Josh is mad, he speaks clearly and everyone can understand him.   It is difficult to be patient with him.  Natalie is a trooper. HAPPY 17th BIRTHDAY, NATALIE.  (7/22/07) Happy B'day to Carrie as well and happy wedding to Michael in Chicago!!!  Wish we were there for the festivities!  Have fun without us!

 

 

 

Josh and Natalie

Saturday, July 14, 2007

Next to Natalie, looks like Josh needs some sun! 

Josh has his father on the brain....

Friday, July 13, 2007

I arrived at Sharp late afternoon.  Josh is in his wheelchair hanging out with Cindi, his OT.  She just shaved him and he looked quite handsome.  Cindi said Josh had been up all day.  Now that Dr. S. has cut down on his meds, Josh sleeps a lot less.  This is a good thing since he needs to be up during the day and sleep at night.  Josh was in a good mood. 

Dinner arrived.  Josh is truly enjoying food.  Elizabeth, his speech therapist, said that often times after a brain injury a patient will not know when they are satiated (full).  They'll keep eating...  She doesn't seem to think this is Josh's case, but she's not sure...  Josh has all his foods mixed up.  He'll be eating a piece of pineapple.  I'll ask him, "Josh, what are you eating?"  He'll say an eggroll."  I'll say, "Josh, is that an eggroll?"  He'll look at it and say "No, no, no, it's pineapple."  He repeats his words and has a slight stutter.  Everyone once in a while, he'll start speaking Spanish. 

Josh finishes dinner.  I put in a movie and we're watching "Oceans Twelve."  Josh is staring intently at the movie.  I don't know if he's understanding what's going on, but it surely looks like he is.  Lately I've been watching movies in Josh's room.  Sharp has a pretty good movie library. 

Josh is pretty calm today. I ask Josh if he wants to lay down and he says yeah.  So, he stands up.  I am holding him by the back of his pants since his balance is off.  He tetters and shuffles his feet.  We get over to the bed.  He's telling me to let go of him.  He manages to get into bed and is chillin' watching the movie when he suddenly says, "Mom, I'm not staying here tonight.  I am sleeping at Dad's..."  

How sad is that???  

Dr. Stenehjem comes in and I tell him about Josh constantly talking about his father.  He says that Josh will eventually sort everything out.  He says he has all these memories and thoughts that are discombobulated, but they'll fall into place in time.

I think of Debbie, across the hall from Josh, who got nailed by a 16 wheeler.  She tells her husband, "Let's go outside for a smoke."  She never had a cigarette in her life...  

Yesterday we had our second rehab meeting with the full staff.  Everyone said Josh was progressing nicely.  Dr. S has put Josh on an anti-Parkinson's drug to help with the shakiness.  The damage to the basal ganglia which has to do with fluidity of movement and balance took a hit.  Hopefully this drug which is experimental for brain injuries will help Josh.  Dr. S also ordered the removal of Josh's feeding tube today.  So....Josh is no longer on any life support of any kind!   

 

 

Josh gets botox today and devours his first candy bar in over three months!

Monday, July 10, 2007

Dr. Stenehjem injected botox into Josh's left wrist to straighten out his fingers and allow for more mobility.  He was also re-casted today to further extend the left arm.  His OT's, Cindi and Sara, signed the cast.  The cast is rather awkward and weighs Josh down a bit on the left side especially when he walks, but it's only temporary.  Hopefully it will do the trick and give him more mobility.

Josh has food on the brain big time.  Today his speech therapist, Elizabeth, took him to the vending machine and bought him a Butterfingers candy bar.  He devoured it in two seconds.  Josh still has to be monitored when he eats to make sure everything is going down correctly.  So far, so good.  Soon he'll be upgraded from diced foods and thickened liquids to normal food and drink. 

Today four of Josh's buddies from school came to visit - Dante, Rocco, Michael and Shawn.  They were pretty impressed with Josh's progress since they hadn't seen him in a while.  At first Josh acted like he didn't know them.  Then he started laughing and said hi to each friend by name.  Josh continues to mess with us and makes everyone laugh.  Later on in the day when Josh was in bed, he looked at me and said, "You look like my mother..."  Then he cracked up laughing.  At least he's in a good mood.

Before I left, Josh tells me, "Mom, bring me rollos and a protein drink with zoom..." (whatever that is?) 

    

Josh gets rave reviews today!

Friday, July 6, 2007

I arrive at Sharp around 11 a.m. and Josh is in the gym with his occupational therapists, Sara and Cindi.  They are working out his arms and lifting them high above his head.  Josh is acting appropriately and is totally cooperative.  Then they get Josh up and work on throwing balls.  Throwing is very difficult since Josh's fluidity and movement is not automatic.  Josh gets into the throwing position lifting his arm, pulling it back and then he freezes in that position sometimes for minutes....   finally he throws the ball.  He's getting much better at this.  He tries to psych himself up counting 3, 2, 1...before finally releasing the ball - this is motor aphasia, that delayed reaction. 

Josh is determined.  If you try to help him, he tells you not to.  If you're playing catch with him and you try to get closer to help him out, he tells you to get back.  This is a good thing.

Dr. Stenehjem arrives and tells us that he has cut Josh's blood pressure medicine way down, almost in half and that he is doing well with that.  He tells us Josh is doing great.  He tells Josh to open up the fingers of his left hand and Josh does it.  Dr. S asks him if he wants to take a break or continue working and Josh says he wants to continue working.... 

I bump into Elizabeth, one of Josh's speech therapists, in the hallway and she tells me Josh is doing incredibly well.  She hadn't worked with him in a few days and she could see the progress.  She said he was at about 90% responding to her questions whereas a few days prior he was at about 60%.  This is all music to my ears! 

After OT, we're all hanging outside in the garden area with Josh, my girlfriend Susan Magee and her daughter, Magee.  We're all shooting the breeze talking about people that Magee went to school with.  She's twenty and is a student at UC Berkeley.   Josh is understanding everything and is participating in the conversation.  He seemed to be enjoying himself.   Then we changed the conversation to Josh's favorite foods and he started talking about steak and lobster, Board and Brew in Del Mar and Roberto's Taco Shop. 

I gave Josh a Naked Juice smoothy and he practically inhaled it.  Then he said he wanted another!  He said it was great.  Then very casuallyJosh says he wants to use the restroom.  I wheel him back into his room.  He's getting up from his wheelchair heading to the bathroom.  He tells me to close the door and get out.  I call the nurse.  They help Josh and he does what he needs to do.  I don't want to act like an idiot and embarrass Josh, but I ran to the nurses station, made the announcement and everyone clapped!    Josh is on his way to being totally independent!   When you are totally well, Josh, I hope you never read this blog because I know you will kill me! 

Josh had dinner, got situated in bed and watched the World Cup on ESPN.  We'll see what tomorrow brings....  

By the way, we haven't had hbot in three days.  I intentionally cancelled his appointments since I wanted to see if I could see a difference in Josh.  It appears that he was more cognitive, more reasonable and appropriate in the past few days.  We are going to hbot Saturday.  If he acts crazy after the treatment and seems to regress I will have to reconsider continuing or just do tuneups twice a week and access the situation.   He's approaching the 40 treatment mark.   

Josh takes on the stairs today!

Tuesday, July 3, 2007

Josh takes on the stairs today with PT, Erin.  He also did 20 squats and walked across the room with help.  He does well with Erin and is always cooperative with her.

Today they recast Josh's left arm.  They are slowing extending it downward so he will have more mobility.  They leave the cast on for several days in one position and then recast to another position until they are satisfied that the arm has the mobility it needs. 

Josh did well with his therapies this morning.  Then on the way to hbot he looks at me and says, "Mom, we have to call Dad and tell him what happened..."  Oh man, I am thinking....how do you handle this one...  I don't want to upset Josh but at the same time I don't want to lie to him.  Here's that confabulation thing again.  I just tell him the cell phone needs to be recharged.  He insists for a while that we call and then finally drops the subject.  

When we arrive at hbot, Bob Sands is there and he is thrilled to see Josh.  Dr. Tuomi is also there and he can't believe it when he sees Josh.  Last time Dr. Tuomi saw Josh he was in a coma.  All the guys are telling Josh how great he looks and then Bob presents Josh with an Australian flag which Australia won in the America's Cup (or something like that...).  It's a flag with a kangaroo with boxing gloves.  Josh thinks this is the greatest and is very gracious toward Bob thanking him and telling him how he really appreciates this....  

Josh goes into the chamber and is fine for a while.  I am sitting with Dr. Tuomi and all of a sudden we hear, "Open the door....get me out of here...."  Josh is screaming at the top of his lungs.  I go over to the chamber, press the speaker button and tell Josh to calm down, that he is getting an O2 treatment and needs to stay in there for a while.  Josh insists on opening the door.  We finally calm him down for a while but eventually have to cut his treatment short since he is being so unreasonable.   Josh then tells me, "Mom, give Ivan (the hbot tech) 20 bucks for opening the door...."  Everyone laughs.

I asked Dr. Tuomi how to handle Josh's confabulation incidents and he said to be as "factual" as possible unless Josh is acting totally off the wall.  For example, when Josh asked me to call his Dad,  I could have asked him what year we were in and then explained that Dad was sick in 1997.  Perhaps a statement like that could  make the right connection and Josh would recall what happened.  

We'll see what tomorrow brings.  How about a monumental breakthrough and an unprecedented miraculous recovery, Josh!  I am sick of this marathon...     

 

Josh wants out in a bad way!

 

Josh with Cindi and Sara, OTs.

Saturday, June 30, 2007

Josh wants out in a bad way!  Last night he told me at least twenty times, "Mom, let's go."  I keep telling him he has to get better first, but Josh insists that he is better.  The good thing is Josh wants to go home, but the bad thing is he doesn't realize what he needs to do in order to go home.  This is tough for all of us....

Josh is also going through what's called confabulation which is common with brain injuries.   He fabricates ideas and is insistent on doing things which make no sense.  For example, a few days ago after hbot, Josh was insisting that we stay and watch the fight after his treatment.  "Mom, we gotta stay here and watch the fight."  I say, "Josh, there is no fight.  You are just thinking in your mind that there is a fight."  Josh was ranting and raving insisting that we stay.   In the van on the way back to Sharp, Josh was screaming and swearing, "F you, Mom.  You let Natalie stay and watch the fight.  We have to go back there.  Hey, Eddie (Josh calls Mike, the driver, Eddie), turn this van around and go back.  I have to watch the fight...."   

We can't reason with Josh today.  We get back to Sharp, one of the nurses asks Josh how he is.  Josh replies, "Shitty.  I hate my mom."   The nurse laughs.  Josh is so angry about "the fight". 

I now start second guessing myself about the hbot and am thinking that it is over-stimulating him in a bad way.  I talked to Dr. S about it yesterday.  I told him what happened with Josh and how unreasonable he was....  Dr. S says to continue with the 40 block treatment.  We decide that it would be a good idea to hydrate Josh and feed him before each hbot since hbot burns through the blood sugar quickly and gets you stimulated.  Dr. S also tells me that what Josh is doing is very typical - this confabulation thing.... 

Josh is also acting impulsively overconfident in trying to get up and walk when he doesn't have the coordination yet.  This is a tough thing to deal with since Josh is so strong and I am not the biggest person...

Yesterday, Dr. S put a cast on Josh's left arm to straighten it out.  When I arrived at the hospital and saw the cast, I panicked and thought Josh broke his arm.  Dr. S will leave the cast on with Josh's arm extended in a certain position and will then recast in a few days to further extend Josh's arm out and repeat the process until Josh can fully straighten out the left arm. 

On a good note, Josh is gaining weight and has a great appetite.  All is going well with the swallowing.  He is chowing down that nasty hospital food! 

We'll see what today brings.  How about a miraculous recovery, Josh!  That would be wonderful! 

 

   

 

We had our first rehabilitation team conference at Sharp.

Wednesday, June 27, 2007

Today I met Josh's entire medical team in the conference room of Sharp Rehab and discussed Josh's treatment plan and progress. Josh was present at the meeting and acted appropriately, nodding his head after everyone spoke.   Dr. Stenehjem led the meeting and each therapist spoke individually about Josh's progress.  Everyone says he is doing incredibly well and is advancing along nicely.  Josh's PT, OT, and speech therapist gave Josh rave reviews. 

Josh has a neuropsychologist,  Dr. Juan Hill, who will be conducting various cognitive tests on Josh.  He seems like a nice guy.  I also met the social worker who will provide me with various resource information and support.  I am going to my first class today in the education room on communication, cognition and swallowing.  (Just what I always wanted to do!) 

I also have a case manager at Sharp who will go to bat for me with the insurance company.  She is a nice gal, Ella.  Her son graduated from UofA last year with a degree from the Eller College of Management, the same program Josh was in.

Dr. S. has eliminated Josh's pain patch and he seems to be doing okay with that.  He was on 25 mcg of fentanyl.  Dr. Tuomi, one of the doctors on the board of directors at San Diego Hyperbarics, says this medicine causes a hard withdrawal but from what I understand, 25 mcg is a low dose.  Dr. S. says he'll slowly wean Josh off the morphine. 

Dr. S. says give Josh TWO YEARS to see his recovery.   That's a long time.  I need to chill out !   

After the meeting Josh says, "Mom, when you leave tell me.  I am coming with you..."     

I felt better after the meeting and went to Bloomingdale's and did some retail therapy damage - new shoes and jewelry, just what I need! 

Josh eats his first meal in almost three months!

Monday, June 25, 2007

Josh passed his modified swallow test which was administered by his speech therapist bedside and enjoyed his first real meal!   This was Josh's first time eating in almost three months!   The meal consisted of salisbury steak ground, carrots chopped fine and mashed potatoes.  To drink Josh had thick cranberry nectar and milk.  Normally, Josh would balk at such a meal, but today he actually ate it.     

Hang in there, buddy.  Soon you'll be eating at Roberto's and Board and Brew! 

 

Josh has beautiful therapists at Sharp Rehab!

Josh with his beautiful therapists at Sharp Rehab.

I think this boy is going to do pretty well with these lovely occupational therapists at Sharp Rehab.  Josh looks pretty happy!

Pictures

Josh with Gina (also a patient) at San Diego Hyperbarics. 

  

Josh with head nurse, Janet, at CareMeridian 

Josh with Justin, Bob Sands' son (designer of chamber) at San Diego Hyperbarics

Josh with Thelma (nurses assistant) at CareMeridian

Tuesday, June 19, 2007

Josh is looking pretty good, isn't he?  He has a good attitude lately and hopefully will thrive in acute rehab.   Come on, Josh, put on some speed, buddy, and get better fast!  I'll give you until tomorrow to make a full recovery! 

 

 

 

Josh enjoys cranial sacral therapy by new therapist, Ann

Monday, June 18, 2007

Here's a picture of Josh a few days before he pulled out his trach.

Arrived at CareMeridian around noon.  Wheelchair van was waiting to take Josh and me to hbot.  We loaded Josh in the van and headed downtown only to be stuck in horrific traffic due to a series of accidents.  The Market Street ramp was closed.  We were thirty minutes late for hbot but luckily everyone else got stuck in traffic and Josh was able to have his full hour at depth.  Josh did great!  He has had almost 30 treatments.  I rearranged all of Josh's future hbot appointments since he'll be going into Sharp Rehab on Thursday and it's best to have his hbot in the late afternoon after all his therapies.  He'll be tired after his therapies and will most likely sleep in the chamber. 

I want to maximize his time at Sharp Rehab since the insurance company will likely look for a way out early on in treatment.  They want everyone to reach a plateau fast so they get out of paying.  Hbot coupled with acute rehab should get Josh better in a hurry.   That's the idea.  I am trying to be as aggressive as I can.

Josh had four visitors today, Dave Edens, Mikey Weir, Westin and Natalie.  He was wiped out after hbot, but hung out with the guys for a while.  Then Ann, a cranial sacral PT who was filling in for Jon came by and worked on Josh.  He loved it!  Cranial sacral therapy is a technique which seeks to restore the natural rythmic movement found between the bones of the skull and the movements of the sacrum.  It aids the circulation of the cerebrospinal fluid throughout the central nervous system.  It is very subtle.  First Ann was just holding Josh's head with both hands and Josh fell into a deep sleep.  He was snoring.  Then he woke up and mentioned something to Ann about his head.  I guess certain spots on the head can be extremely tender when pressure is added.  Ann then worked with Josh on his arms and legs.  He responded beautifully and was roaring to go.  She told Josh he was doing so well that he was moving on to an acute rehab facility on Thursday.