Majid's Rehab Updates

Last night my Dad and I made a short video of him wishing everyone a wonderful new year. I think he had a hard time talking to my computer though because when I was editing it I noticed he fidgeted a little bit and didn't smile much. I promise there were several laughs in between the cuts! Maybe if I have time I will make an outtakes video :-)




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Hello,

We have gotten many requests for an update so I better not keep you all waiting.  Currently he is doing very well and everyone involved has been very pleased with his progress.  I'll elaborate more on both physical and mental improvements that he's been exhibiting over the past several weeks.

Physically he is getting very strong and comfortable with daily activities.  When he walks, he uses a walker and is nearly 100%.  In fact a few times I really try to stand back and not assist him at all to see how he does.  If he is fresh, early in the day, he will walk very well with just the walker.  He maneuvers around obstacles, turns, rotates, goes up and down steps and everything without losing any balance.  However, usually in the evenings after his therapy classes he tends to lose balance to his left side, where I'll help catch him and straighten him back up.  So when his muscles are tired he does require some help, otherwise he's at about 98% with just the walker, and can keep a normal walking speed if reminded to.

Eating he still does very well. He occasionally drops his fork, (due to the numbness in his hand) or spills some food on the table.  But generally he is much neater when eating.  For standing up and sitting down he does still need help for safety.  As we have found out a couple of times, he is able to stand up on his own, but these are the times that he has fallen, so we repeatedly ask him not to get up unless someone is around to help.  Right now is a dangerous time for him because he thinks he doesn't need help, where in reality he does.  For example, this morning you probably got right out of bed, but you didn't pause to think do my legs still work 100% before I get up.  This is what it is like for my dad, he will stand up, and then realize, "hey my legs don't move as nimbly as they use to."  But at that point he could be off balance and about to fall.  Fortunately he's had only 2 falls in the past two months, neither were serious.

Finally he does simple things more normally.  For example he'll put on his own shoes, he'll wash his hands when leaving the bathroom.  Brushing his teeth and shaving are completely natural to him.  As well as talking on the phone, he probably sounds completely as before when on the phone.  This leads into his mental improvements.  He is very fluid in conversation now.  You can hardly tell that he has changed at all when talking to him.  He always understands what you tell him, and he always makes a reasonable response back.  His writing has improved, although still a little messy. Last night he wrote the sweetest card to my mom for Valentine's Day without any help from us.  The therapy clinic give him homework to do at home.  Usually it will be math problems which he can do very well.  Unfortunately he has a hard time reading the small print on the page and keeping track of where he is working on the page.  In fact for him, reading the math problem out loud is harder than it is for him to solve it.  Also they give some homework that is drawing and tracing shapes.  Unfortunately he does have difficulty visualizing the geometrical shapes unlike before.

Also his short-term memory is still weak.  It has improved considerably, but smaller details are quickly forgotten.  He will always remember if we someone is planning to visit us, but he'll usually forget or confuse when the person is coming.  For example he'll get off the phone with some of you and only be able to recall the last few minutes of conversation when we ask him.  This is too bad, but we hope it will still improve.  In general he has improved significantly but he still tends to be careless or unperceptive about certain things.  For example a couple times at dinner he might put food directly on the table instead of on a plate, or he might try to walk past something and not realize that he is banging into it.   These things are certain to improve over time, and generally relate to his self-awareness.  It has definitely improved, he is always concerned with the look of his hair, but certain things still need improvement.

So far, it's been very encouraging!

Chad

Hello all, and Happy 2008!  I hope the new year is going well for all of you--ours has been off to a very positive start!  We've passed the eight month mark with Majid's recovery and overall, he is doing quite well.  As Chad and I were discussing last night, his progress in these past few weeks has really been remarkable.  He actively participates in any conversation, asking and answering questions that show he's been listening.  He seems to get confused much less easily and can jump from topic to topic without combining the two (whereas before, sometimes he would confuse a show on TV with something else we were talking about).  His memory seems to be getting better as does his awareness of the dates and time.

Physically, he is improving rapidly as well.  He's been using a walker to walk around the house and we've noticed he's getting better at catching himself when he starts to lose balance.  He still needs some assistance from Chad or Andy, mostly to keep him balanced, but he's getting to the point where Susan or I can start helping him fairly easily.  He's also able to maneuver the stairs pretty well.  Going up seems to be much easier for him and he can take a flight of stairs quite quickly.  Coming down takes a little more effort but he has improved quite a bit from two or three months ago.  A lot of the challenge is keeping his balance while his weight is pointed down the stairs.  Last night he went up and down the stairs three times at the house in 15 minutes or so, which shows his strength is definitely improving!

He's getting therapy a couple times a week in Bellevue and last I heard, they had him on an elliptical exercise machine for about 5 minutes.  He's also doing great with fine motor control and can use the knife/fork easily at dinner and is getting better at writing. 

Overall, we're very, very happy with the improvement we're seeing.  He jokes and talks very much like he used to and lets us know he's very happy and grateful his friends and family are around.  When he was in the hospital last summer, the doctors said improvement really starts happening around the six month mark.  Now that the shunt seems to be working correctly, we're really seeing the "Old Majid" come out, which has been fantastic.

Thanks to everyone for your visits, emails and calls.  I know he enjoys talking on the phone and visiting so if you'd like to stop by, please let us know!  He's usually home unless Susan is at work or he has therapy.  For those of you that talk with him on the phone, we'd love to know how he's doing with those conversations.  It seems like he doesn't get as confused as easily but we can't be sure.  Any interaction certainly helps his recovery though!

Thanks again & have a happy new year!

Love,
Anna

Hi All,

I realized that I hadn't posted since Friday.  We went home that evening and have been doing great since.  His awareness of his recent surgery and his situation is very good.  His short term memory has been improving for certain things. Also lately his old personality is really coming back.  He acts and sounds a whole lot more like himself which is great, but unfortunately it makes him a little more difficult.  He has been getting a little angry a couple of times and doesn't like to take any of his medicine.  Overall we're doing great though and I think he is really improving.  He's moving around the house fine, I've been letting him use the walker and he is really capable of supporting himself entirely with just the walker.   Unfortunately he gets tired very quickly and moves quite slowly. 

Right now the only main battle seems to be a bit of depression.  Lately he occasionally doesn't eat as much as he used to and is "tired" and uninterested all the time.  He continually wants to lay down and take a nap.   To me it seems like his awareness of his disabilities has started to cause a little depression so we're going to work hard to try and help him through it.  Also we'll check with the doctors to see if we can get a little more anti-depressants. 

Overall he's doing well and it was nice to spend Christmas together as a family.  We could really see a change in his mood when we started opening presents.  He really did get happy and was fun to be around.  Unfortunately that only lasted a couple of hours before he was back to being sleepy and uninterested. 

Anyways I hope you all had a Merry Christmas and, looking forward, a bright new year!  We appreciate all of the support you guys have provided for us this year as it was a very difficult year for us.  But now we've made it through the thick and are actually very fortunate to have dad back where he is today.  Best wishes to you all!

Chad

Hi All,

I just spoke with my mom and wanted to post an update on how my dad is doing.  Yesterday he had a rough day and was nauseous for a majority of the day.  He still isn't eating that well and he is getting headaches when he sit or stands up.  This is a little concerning so he's going to get a CT scan right now and meet with the neuro fellow Dr. Chaterbi, (who is filling in for Dr. Newell while he is out on vacation.)  Based on the CT scan they will decide whether the shunt needs to be adjusted.

Otherwise my dad has been doing well, moving his arms well, and talking normally.  Currently we're unsure when we'll go back home, but we'll be unlikely to leave until we feel my dad is a very good shape so we don't have to try and return during the holidays.

Chad

Hi All,

The surgery yesterday went very well. My dad was quite alert for part of the day despite him being under pain medication and recovering from the general anesthesia.  He was talking and rather cognizant of where we were and what was going on around him.  This is a good sign, but we'll still need to wait 3 or 4 days before we'll know whether the new valve is providing adequate drainage for him.  If he continues on the route he's on, we'll probably leave the hospital tomorrow and monitor him very closely to see if his condition changes over the next week.

Chad

Hi All,

So from the tests over the weekend they were very clear that the current drain my dad has is working.  Unfortunately it is also clear that it is not providing enough drainage for him and the pressure builds up inside his brain.  After careful deliberation Dr. Newell has finally decided what to do with the shunt to increase the drainage.  They decided to try a different type of valve than what he currently has to see if this might work.  Initially there was talk of relocating the drain into his chest instead of the abdomen where it currently lies.  They have decided not to do this yet, but this would be an option if today's surgery doesn't provide enough drainage. This would have been a fairly invasive surgery as they would have had to make an incision in his chest.  Although for the price the surgery should be worth it because of the shorter drain and lower nominal pressure in the chest, the drain is more likely to flow faster.

Today they will be going in and replacing the current valve with another type of valve, which is a very simple procedure, apparently just a 20 minute surgery.   Basically they are going to insert a valve which doesn't have an anti-siphoning valve.   As it was explained to me by the nuero nurse practitioner, the current valve has an anti-siphoning valve on it which prevents flow rate spikes when he stands up or sits up.   I guess as far as physics go when he flexes his muscles it probably causes some sort of siphoning down the tube which risks draining too much fluid.  His current valve is a more advanced valve that prevents this siphoning effect that causes extra drainage.    Well since we'd like to increase drainage we're going to go to the less sophisticated valve and hope that it a) drains more, and b) doesn't drain too much.  Although honestly for now too much drainage is ok, because then they could set the flow rate (measured in resistance, so lower is faster) to 1.0 instead of .5 that it is currently at.   I guess the only side effect is that he won't be able to lay down flat ever again.  Although apparently he really isn't supposed to be now.  My guess this valve they're putting in is susceptible to back pressure, and if he's laying flat there's a likelyhood that his abdominal pressures could cause extra brain pressure, something that the anti-siphoning valve prevents...

Anyways that's the the run down, hopefully it's clear.  He went into surgery just before 11 AM and should be out soon.

Chad

Hi All,

I must apologize for not posting sooner but we have been having some more issue's with my dad's shunt since Thursday.  As I last posted my dad was doing very well on Tuesday and returned home from the hospital.  Things were looking promising as he just had gotten a new shunt and he recovered very well from the surgery.  He quickly began to change and by friday was demonstrating some very scary behavior.  He was tending to lose control of his arms and legs and also wasn't able to straighten them or relax them.  They seemed to be essentially muscle spasms and by Saturday he was losing his ability to even eat. Also he stopped talking and really became unresponsive.   We took him into the ER on Saturday and they ran initial tests on him.  They found that he had an infection which they started treating with antibiotics.    The antibiotics were a success and he starting talking again a little bit soon within being treated.

Unfortunately his CT scan on Thursday and on Saturday showed that he still had excess fluid in and around the brain that was limiting a majority of his functions.  Yesterday Dr. Park did a spinal tap to remove about 30 ml of fluid.  Today my dad has already started responding better.  He is talking and smiling and very responsive.
  This has indicated to the doctors that the shunt is either not working properly or inadequate for this situation.  Currently they are discussing options on what they can do, potentially adding a second shunt, or maybe adjusting the existing one.   My dad will probably have the surgery today.  So I'll keep you posted once I hear.

Chad

Hi All,

Good news today, apparently my dad is a lot better this morning.  My mom says that he's basically back to where he had reached before the surgery.  He is apparently moving, eating and talking a lot better today.  Because of this he is cleared to come home this evening after dinner.    So I just wanted to share the news with you all, and hopefully things continue to look upward from here.

Chad

Hi All,

Here we are the third day after surgery and so far recovery has been slow.  He is of course improving however, still in small steps.  Right now he is talking more, which is nice to be able to hold conversations with him, but unfortunately he is generally very confused.  A lot of his thoughts and what he says don't make sense to us.  As far as mobility he is still limited.  He has use of all of his arms and legs but it is slower and a little more deliberate than it used to be.  As for walking, they have had him walk from the bed to the window with the walker but it appears he is quite slow moving.   They did another CT scan today, and two rehab sessions.  As far as the CT scan, things appear fine, as no news is usually good news around here.   The rehab sessions were quit short and minimal.  We are expecting to stay another couple of days still and we aren't sure when we'll be headed home.   We expect it to be leaving sometime this week unless we are able to admit him back at floor 6 east with the intensive rehab.    So far our insurance is unwilling to commit to that though.

I must apologize for the gloomy report today, but we have to realize that he had brain surgery 3 days ago and some days progress will be less than others...  I'll continue to report more as he improves.

Chad

Hi All,

I wanted to give a quick update on my dad and how he's been doing this past week.  Overall  he has been doing quite well, his therapy sessions are going well and he seems to be making improvements in them.  My mom has really noticed that his memory is tending to improve for several things.   However at this point, it is quite random the things that he does remember compared to the things he doesn't remember.  He still tends to have a hard time remembering ordinary things, like meals, and his daily routine-like activities.  However he does tend to remember non-ordinary things like vacations and outings.  It's clear that he spends a while thinking about these types of things and therefore remembers them completely on his own.  Unfortunately he still does tend to have negative reviews of his therapy, but I think that's more a result of his personality than anything else.  

Overall he's still doing very well and we're happy to see his progress.

Chad

Hi All,

Again as usual I must apologize for not posting on this blog as frequently as I'd like to or as I promise.  If I stray too long, please don't hesitate to e-mail me and ask for an update. ( chad@assareh.com) 


Physical:
These past 3 weeks have gone very well for us all.  My dad has been making remarkable improvements physically and cognitively.  One of the major changes that we are adopting has been to stop using the wheel chair.  Whenever Andy or I are around we will always have him stand up and walk to wherever it is he is going.  Also we have him sit in normal chairs to eat his meals and I think has helped improved one more step towards complete normalcy.  Unfortunately we still have to use the wheel chair but now it is only used for when my mom and dad are home alone.  On a similar note, we now also take him to the bathroom to brush his teeth, floss or go to the bathroom, but again this is only when Andy or I are around to help.  Overall this has really improved his strength and ability to stand/walk comfortably for decent distances.  Unfortunately he's still a little shaky and mom doesn't feel comfortable walking him yet.   I'm hoping this will improve when we get a 4-pronged cane for him to use.

As far as walking he has moments of being extremely sturdy and he has moments that are extremely shaky.  When I remind him to take long steps, keep his back straight and look up he will glide down the hallway with very little help.  However when he gets near furniture or objects that he needs to go around or sit on he slows down considerably.  He spends a lot of time trying to figure out how to maneuver around obstacles and it takes quite a bit of thought to get his feet exactly where he wants them as opposed to when he's just walking on cruise control.  Also he is no where as good at multitasking as he used to be.  While walking he is easily distracted, by thoughts, people talking, or the cats and pauses.  Overall though he's very strong, we will go up a flight of stairs without stopping, (about half-speed compared to a normal adult) and he will be a little winded.  As an example to explain the progress we've made since a early October, a lap around the house would be from the kitchen through the hallway to the front entry and back to the kitchen. That lap would take almost 20 minutes.  Now a lap consists of from the living room to the front entry, up the stairs, going across the hallway all the way to the playroom, back down the second set of stairs and back to the living room.  That whole trip takes about 10 minutes.  In fact on Monday we did two in a row but we took a break before going down the final set of stairs as a safety precaution.   Also it's important to note that he can do these with only one person's help and only needs occasional reminders to take long steps and to keep his back straight.  Overall the progress has been good, although he may not remember, he promised my mom that by Christmas time he will be able to sleep in the master bedroom again, meaning he'd have to be able to go up and down stairs with minimal help.  I think if we continue with how we have been, we will definitely reach this goal.

Cognitive:
Cognitively my dad has really improved very well.   He is far more alert and really strives to be included in daily affairs.  Unfortunately since he still process information much more slowly we have to repeat things several times before he understands it.  An example of this is a trip that we are planning to go to Vancouver in the coming weeks.  Once the discussion arises, my dad will latch on and request to know the details.  The difficult part is that once he is caught up and understands, he'll usually forget it all and 30 minutes later bring it up again.  Frequently my dad will feel like there is something that he is supposed to do/plan but he can rarely remember what it was.  This type of confusion is difficult for him and is a lot of the reason why he gets fixated on certain topics.  It seems like he is frequently worried about not being up to speed on things and gets frustrated when he feels like he should know something but doesn't.  Overall the self awareness is exactly the progress that we are looking for.

Overall he is generally still easily confused and unfortunately has a hard time differentiating real life from something in discussion or on TV.  For example several times, while we watch football on TV, he thinks that Andy or I play football on a team or that we for some reason has some task to do for the team.  This also comes out frequently with the mentioning  of somebody pregnant in the family or a little kid.  He still frequently believes that there should be some sort of child around.  We still have not fully understood who he thinks this child is, but it is clearly imagined and untrue.  This happens frequently where he will let something fictional leak into what he thinks is reality.  Unfortunately he believes it is so real that  he will not accept our explanations to him that he is mistaken, however occasionally it's a topic we can show proof of and he will acknowledge his mistake.  We've found that it's hard for us to clarify his thoughts because he speaks in very vague terms, (ie. "that one", "those people", "it") and whenever we suggest something to try and clarify he will just say yes.  So I suggest to others as well, even if you think you know what he is talking about or with who, please try to get names directly out of him without prompting.  An example of a conversation would be my dad would say "Is that person coming for dinner?" and we'll of course ask who he is talking about.  Then he won't be able to answer, and thinks about it.  If we were to say something like "do you mean Andy?" he'll just say yes, even though that most likely wasn't his original thought.  That's a behavior others should be aware about when they talk with him.

Phone Calls:
One really important issue that I wanted to address today is the topic of Phone conversations.  Lately he sounds a whole lot more like himself on the phone and it is easy for someone on the other end not to realize that he is still very easily confused.  This has happened several times, and now at this point I'm afraid of what random things he has told people all over the world.  This basically follows what I just wrote about his cognitive state.  Since he has a hard time distinguishing fiction from real life  there has likely been a lot of erroneous information that he has told people.  Whenever I'm around I try to listen in and figure out what he's talking about so I can hopefully correct him.  But generally we'd like to make you all aware that he is generally not a reliable source for information.  Unfortunately since he confuses things very easily, and seemingly fills in whatever he can't remember with his imagination, a lot of his information is skewed or horribly inaccurate.  As one example he was on the phone and I heard him say that he's at a hotel, or just came from a hotel, but we were sitting at home.   The reason why he had mentioned a hotel was because about 20 minutes before that phone call we had spoke about reserving a hotel room for our trip to Vancouver.  That conversation had apparently lingered in his mind and he knew there was some discussion about a hotel, so his imagination filled in the rest.

So please all, when you talk to my dad take everything as potentially incorrect, even if it seems quite believable.  At least for now I'd estimate more than half of his conversation is somehow incorrect.   Nevertheless it is very important that you all keep calling, every conversation is exercise for his mind and very important.   I just want you all to not be afraid if he says something worrisome or wildly incorrect.

Anyways that's all for now, this is quite a lot of information for one day.  See you all, and I hope to post more frequently...

Chad

Hi all,

We will continue to update this blog even now that my dad is at home.  I will most likely update on a weekly basis since things do not progress as rapidly as they used to.    Fortunately since about two weeks ago that I lasted posted there are many good things to mention.  He is completely recovered from that fall several weeks ago and hasn't shown any signs of injury for the past two weeks at least.  He does frequently show improvement in memory and will occasionally remember something that was discussed previously and bring it up in conversation.  For example, these past two days he has repeatedly asked about Aziz Khoshnavaz and when he will be coming.  For those that don't know, Aziz is family of ours and is moving to Vancouver, BC and will be arriving today.  Through things like this, and through other smaller mentions we can tell that he is making improvements in memory.  To further advance this we have been trying to have him work out homework type problems and worksheets.  One of the therapists brings by some worksheets for him to fill out and I believe they are helping him recover his mind.  We will continue to help him with these and try to increase the frequency.
As an overview of his general state he is very alert, usually in conversation and will frequently start conversation.  He does still occasionally confuse where we are, what is happening and who is around.  Although the major difference is now when we correct him he usually will agree and acknowledge his mistakes where as before he would be confused and not understand his mistakes.  That is important progress in itself and will hopefully reduce the frequency of these situations occurring.

As far as mobility there are also advancements.  We have seen noticeable progress with him moving around.  For example, my mom can routinely get him in and out of the car all by herself.  She has managed very well now and together they are quite fast at getting my dad into the car.  This progress is mostly the result of many doctor's appointments and his day care class while my mom is at work.  Several times a week my mom will put him in and out of the car which gives him the practice he needs to make progress.  Unfortunately his walking is not practiced as frequently and therefore hasn't improved as rapidly.  He is still quite shaky and requires a considerable amount of help to have him walk around.  His balance is still not very good so it is too difficult for my mom to help walk him.  Also the therapist that they send also feels unable to walk him so usually either Andy or I have to be around to get him up and walking.   This happens probably only 5-10 times a day and so his progress has been minimal.  With help he can take very nice long strides but he is usually leaning over too much (ie has bad posture) or will not keep enough space between his feet and will partially step one of his feet on his other.  Currently we are working on arranging him "outpatient" therapy.  Outpatient therapy is where we could take my dad to rehab specialists and they could work with him for 1-2 hours several times a week.  Our goal is to get him more of the assisted rehab activities that he was getting in the intensive rehab program.  We're hoping that extra 3-5 hours a week of specialized rehab should really help him progress much better.

Another battle we are fighting right now is with his energy level.  He's still on several medications and nearly every one indicates that they will cause drowsiness, (enough that they don't recommend operating vehicles/machinery)  It seems that the medications compounded with his under active thyroid really make him sleepy nearly all day.  This makes it very difficult and tiring on us to get him up doing exercises, puzzles or worksheets.  We're talking with the doctor's to figure out the best strategy to combat this.  I would consider his energy level one of the major reasons why his progress is slower at home versus when he was back in the intensive rehab.

That's about all for now, I'll keep you updated on how things go.

Chad

Hi All,

I wanted to update you all on how my dad is recovering.  Since Monday he's been doing really superbly.  He has more or less recovered to where we last left off if not better.  When he walks he is able to do a good job of keeping a good stance and balance.  Also he takes some very large steps which is good.  We still are not using the walker so he's making a lot of progress.

Also he is now extremely talkative... but unfortunately not always making sense.  Right now he will generally get some random idea of something we will/must do and he'll hang on to for a while.  This was very similar to how he's been in the past where he'll keep talking about planning, preparing or doing something that he comes up with randomly. I'm expecting this will subside by the weekend.

Other than that this whole episode of his fall seems to be concluded favorably.  We still have doctor's appointments next week as a final check just to be sure.

Hope you all have a great weekend!

Chad

Hi All,

First I should apologize for not posting any updates for over 2 weeks, especially since many of you have heard that this last week has been quite worrisome.  Now before I upset too many people I want to report that my dad is clearly showing many signs of improvement and is quickly returning to where he was exactly one week ago before he fell.

Update for 10/1- 10/7:
During the first week of October my dad was showing very promising signs of improvement.  He was remember simple things like the day of the week, year or month.  He was very talkative, always following in conversation and aware of what's going on around him.  He would frequently ask to call myself or Andy while we were at work.  Physically we were keeping him fairly active with exercises during the week and outings during the weekends.  In the evenings we would walk him around the house, have him doing squats and a couple times even make him attempt climbing the stairs.   We stopped using the walker and would make him carry most of his weight on his own feet, usually we would have a person on each side of him to help with stability for safety precautions.  Generally the amount of help he required was minimal.  He did require help with simple things such as reminders to keep a wide stance as well as direction on where to head.  My mom was quite pleased because of he was able to make it up the full flight of stairs and was showing that he would soon be able to return to his own room to sleep at nights.

10/8 - present:
Unfortunately last Monday my dad fell out of his wheelchair and bumped his head on the floor in the hallway.  Immediately afterwards he reported that he was ok with just a minor bruise which did seem the case for the rest of the day and throughout the evening.  In fact he maintained his normal exercise regimen and showed no signs of brain injury.  By the next morning, Andy reported that my dad did start to seem a little bit more confused and sluggish than usual and spent a lot of the day being tired and wanting to nap.  This wasn't alarming at the time because he does sometimes act like that in the mornings when he is still tired. 

By Wednesday, two days after the fall, I arrived in the morning and he did not greet me at all or talk to me at all.  The first thing I noticed was how he was so much quieter than usual and he was hardly able to eat his breakfast.  My first impression was that he was angry about something but after 15 minutes I started to realize that something was very wrong.  My mom and I discussed it and we took him to the ER to get checked out.  That day they ran a CT scan on him which showed increased fluid in his ventricles (in his brain) and so they ordered a shuntogram to monitor the fluid flow through the drain he has in his head and it appear to be working acceptably.  Finally that day we met with Dr. Chatturbi, the current fellow working under head doctor Dr. Newell (Dr. Shafa's replacement) and he checked the setting of the drain.  At that time Dr. Chatturbi told us that the shunt was set to the maximum setting and could not be set to a higher setting.  Also my dad seemed to be responding a little bit more than we had seen the past two days and appeared to Dr. Chatturbi not to be too out of it. He recommended that we wait a few more days to hope that the pressure alleviates naturally and that any swelling he might have inside could go down.  He instructed us to return in a week or so if we did not see any change.

Several very difficult days went by and we had not seen any improvements.  My dad was still very lethargic, he spoke very little and lost basically all of his ability to walk.  He spent most of the time in his chair appearing to be asleep but slightly awake and was virtually inactive for the rest of the week and the entire weekend.  By Sunday evening my mom and Andy decided we had waited long enough and it was time to go back and see the doctors.  Monday morning the three of us took him in and fortunately we were able to get an appointment with Dr. Newell and Dr. Chatturbi at the same time.   They compared the CT scans from Wednesday to yesterday and they did not see any real change good or bad.  Dr. Newell then checked the shunt and found that the setting was not at max value as Dr. Chatturbi had thought.  My guess is that he incorrectly had read the shunt on Wednesday.  So Dr. Newell decreased the resistance of the drain which will increase the drainage.  Dr. Newell said it would take a couple days for the cranial fluid pressure to normalize but almost immediately my dad started to recover and become more alert.  Last night he was talking a lot more, although he still did not make a whole lot of sense.  He also resumed walking, not quite as well as before, but much better than the whole week previous to seeing Dr. Newell.   I'm hoping that by tomorrow he will be completely back to where he was before the fall and the recovery process can continue. 

We will of course keep you updated on how things turn out by this blog.

Thanks,

Chad

Hi All,

The big update this week is that my dad has now moved home.  On Saturday morning we brought him home exactly 4 months after he went to the hospital back in May.  We brought him own in a normal car with his physical therapist Brad's help.  (Although it really wasn't too tough).  Once arriving, we gave him his walker and with some of my help had him walk through the door on his own two feet.  After the long journey in the last 4 months I think it was quite spectacular to see him return home walking with minimal assistance.  Now at home, we've been pretty comfortable taking care of him with no major difficulties.  Due to all of the uncertainty early on I have to say I am really pleased with his progress and now to have him home and quickly returning to our norm.

Currently we have to assist him whenever he moves around the house.  We have been trying to minimize the use of the wheel chair and generally I try to have him walk (mostly with the walker, but sometimes without the walker and a person on either side for support) wherever we are going.  The real challenge now is balancing his relaxation time with exercise and therapy.  Since coming home he tends to enjoy napping quite a bit more and tends to get tired quickly.  Meanwhile the exercise he gets is limited by the workouts we give him and the times we have him walk either to dinner or to the bathroom, occasionally an extra circle around the downstairs of our house.   What has been really effective is the step that leads down to our TV room.   This has been great practice for my dad to relearn going up and down steps and so far he has nearly mastered it.

As far as his cognitive abilities, we have also seen improvements.  I can recall fewer and fewer instances where his speech is meaningless, and also fewer instances of when he's talking about completely different or random topics. (Usually marked in the past about buying or renting property or the hospital room we were in) Generally he has some confusion occasionally about locations, people or things.  Also he tends to believe that he has grandchildren... which the psychologist has suggested as "wishful fulfillment" and that we should just ignore it when he mentions something of that sort.  Non-the-less he seems to have almost instant improvements from being at home in a familiar place, he continually starts to make more comments that indicate awareness to our surroundings.  For example, he asked me to prevent our rocking recliner from rocking so that the cats would not get crushed underneath. (For those that didn't know, we now have two cats Luke and Leia around the house.  These are Andy's kittens and have been really great to have as far as company for us all, and also to interact with my dad.)  Another example is my dad has asked us to keep our faces away from the cats in worry that they might accidentally scratch us, and one other time he asked Anna to put away her books and not to study while we had guests over.  These are all small example but to me they indicate a lot more awareness of what's going on around him without having to be told.

On Thursday as part of his therapy, he was taken to Jefferson Golf course to help him understand that he can still do the things that he used to enjoy.  Randy went with him and two therapists were helping him stand as Randy and my dad competed in a small putting competition just as they used to for many years.  Apparently my dad was still taking it very competitively and actually did a good job.  I was glad that they arrange such a successful outing for my dad and I think the challenge is now upon us to continue taking him out and doing fun things.

Overall he seems to enjoy being at home and has been eating remarkably.  In fact after the first night's meal we are going to be keeping a sharper eye on him and not let him over eat.  He seems to really enjoy everything we've cooked so far.  So that's a brief recap of our weekend.  For those of you in Iran who have been calling and leaving messages, I wanted to say know that we have been receiving them. I let my dad listen to all of them, however I should apologize for us not returning any of the calls, unfortunately it's been difficult lately to keep him awake past 8PM when we would be able to call, and generally in the mornings I am not with him to help him dial.  From now on please call the house phone instead of his cell phone, 425-562-9151, you'll have a better chance of reaching him there.

Thanks all!

Chad

Hi All,

I wanted to update you all on the great weekend we just had and also my dad's current progress.  First I should mention that on Thursday my dad crawled out of bed by his own efforts and unfortunately fell, the result was only a couple of minor bruises.  He reported that he was going to look for Susan and that's why he was trying to get out of bed.  Since this happened, the nurses have hooked up an alarm on his bed and his wheel chair that will notify the nurses if he does this again.  Also we have given him his cellphone which has myself, Andy and my mom as speed dials which he can use to get a hold of us instead of trying to leave bed to come find us.  Overall it shows progress in two ways, he's starting to become bored when he's left alone and second he had the strength to move himself all the way out of the bed and over/through the railings, a pretty impressive feat.

In lighter news Sunday we took my dad out of the hospital for the first time on a family outing to Ivar's Brunch.  The therapist Jane helped us arrange this as an exercise to help us learn that "we can still go out in public and do normal things." She came with us to give assistance and training. It really was not too difficult maneuvering my dad around as this country is probably the most wheel chair accessible friendly place in the whole world.  However we did learn that we should ask ahead of time for wheel chair accessible accommodations.  Overall the Brunch was very good, we had a large group yet my dad was able to manage all of the noise and stimulation just fine.  He ate a decent meal and did a good job of not spilling or creating any messes.  Overall I think he really enjoyed it and was happy to have so much family around him as we had Mike (Parham), Anna's Parents, and Shaya join us in addition to myself, mom, Andy and Anna.  As the Voglers were leaving my dad's cultural roots returned as he insistently attempted to stand up to properly say good-bye.  Several times we asked him to stay seated but he simply would not, so in the end we helped him stand so he could show his respect to them as we send them off.  Overall the afternoon was very successful and I think it remarkably helped his progress.  On the drive down he was very keen on the sites and sounds of the city.  Of course there was a Mariners game and Seahawks game starting soon so many pedestrians were out and about adding to the stimulation.  He clearly had the awed look of someone who hadn't seen a city in nearly 4 months!

Since the brunch I have noticed a considerable cognitive advancements.  Yesterday we had a very good conversation about my career and he was providing novel suggestions using his analytical abilities.  Also at one point he said that he was "looking forward to going home so he wouldn't burden me anymore" and that "i could have more time to spend on other things."  I found that to be quite a sensible comment, although I of course reassured him that we are not burdened by him.

We are still expecting that my dad will come home on Saturday.  My mom and Andy are doing a walk through of the house with a rehab specialist to assess our readiness for his homecoming.   Hopefully by Saturday we will have all of the logistics figured out.

Chad

Hi All,

I just wanted to make an update that today my dad moved back to the Swedish Cherry Hill Campus.  We have returned back to the intense rehab program because it's facilities and rehab program was much superior to to the rehab at Marianwood.  We will be staying for 2 full weeks meaning my dad is likely to be moving home exactly two Friday's from now which would mark exactly the 4th month from when he was admitted.  The core of these next two weeks will be preparing my dad to manage at home.  Hopefully they will help him with things such as getting in and out of a car, moving from a bed to a chair with minimal help and showering with minimal assistance.  Another important aspect of the program will be preparing us for helping my dad once we are all moved back home.  We will be figuring out the details on where my dad will stay, shower, eat.  There is quite a bit of preparation that we need to do and the folks here at Swedish are going to help us make all the necessary arrangements.  Overall we are very happy to back.

As far as my dad's condition, I think that his old therapists will be quite impressed and excited to see the progress he made even with the diminished therapy he was receiving. Currently my dad has gained a lot better spacial awareness.  Yesterday Anna and I had him wheel himself in his chair which we had not done for over a week or so.  We found that now he is a lot better at steering himself and when left alone can successfully navigate the wheelchair to where he wants to go.  He is clearly going through a learning stage and took some time to understand how he could steer himself and control his turns.  Overall his left arm was not dominating as it was before and he even was beginning to push the wheels in opposite directions to make tight turns.  Overall I notice that he is taking a lot more interest in how things work and function.  Simple mechanisms which before he would completely ignore, he now spends time experimenting and fiddling to understand how they work.  An example of this is his wheelchair's armrest.  Last night with little of my help he figured out how to raise and lower it and to adjust it to his liking.

I'm really pleased to say that my dad continues to make progress and is clearly resolved to recover fully if given the time.  He continually says that he's going to do everything he can to recover back to himself and is really starting to understand that he currently has impairments but understands that they are temporary issues that he will learn past.   Of course he still does have a long way  to go to reach full understanding of all things going on outside his hospital room.  We are doing our best to help get there but he does a lot of the work.  I'm optimistic of the next couple of weeks but I think we'll really see improvements over the next few months.

Chad

I just spoke with my mom and my dad will not be moving today.  He will either move to Swedish tomorrow, Thursday or Friday.  We do not know exactly when yet so we will wait and see.  He is still doing very well and I will write more updates about him soon.

Chad

The news for today is that we got the 'ok' from the Swedish rehab
center and they will be admitting my dad back. As many of you may
know, we have been trying to get him back to the intense rehab because
the care and attention he received was much better. There exercise
programs were much more intensive and more frequent and it is also
easy for my mom since she works nearby. We also liked have a private
room, but most importantly the advantage is faster recovery for my
dad.

The move is planned for Monday or Tuesday next week and he is
scheduled to stay there for 2 full weeks. After the two weeks are up
he will be coming home permanently. This will really be nice to have
him home again and I think in two weeks he should be up to it.

We have noticed this week that his memory is improving. He will often
remember that he either just ate, or just was on the phone with
someone. He was able to recall visitors from throughout the day.
This is really encouraging, although many times he does not make sense
when he talks, or he'll be caught on a irrelevant subject and only
talking about that. This has been improving though and it will only
continue to improve more.

Physically he has also made great improvements. One day they had him
walk 150 feet using a walker and very minimal support. He is gaining
a lot of dexterity with his hands. His eating has improved
tremendously. He requires very little help to eat amongst other
things. Also he can nearly stand up with little or no help. He is
always in a good mood and he has really appreciated all the visits and
phone calls so thanks a lot everyone!

Hi All,

My dad has been doing really well recently.  After a few days at being at Marianwood we decided that his therapy was not enough to help him regain his strength.  So my mom called the insurance case agent and told her that we weren't happy so they've doubled his therapy and are currently looking into the possibility of moving him back to the Swedish Rehab facility.  Since he's been getting twice the therapy he has made quite a lot progress physically and mentally. 

Mentally my dad is a lot more aware.  He is always following with the conversation and regaining much of his personality.  Whenever we engage in discussions about whether he should move to a different location or stay where he is at, he always likes to be involved and wants to approach it with a problem solving mentality.  The great thing about my dad is that he is always in a good mood.  He's actually quite fun to be around because he's always laughing and smiling and is making jokes whenever he thinks of them.  His awareness is getting better of where he is at and what his situation is, unfortunately the forgetfulness is really working against him here.  His short term memory is showing improvement however it is still very poor.  For example, now we will ask him if he just ate and he will correctly say yes.  (Before he wouldn't know) But then when we ask what he ate he usually can not recall.  I think overall though his attitude is fantastic and I think it is really helping his recovery.  When it comes to small tasks such as tying the draw string on his pants or taking off his shoes, he will work at it with endless patience until he finally completes the task to his satisfaction.  For example, the first time I asked him to tie his own pants drawstring he worked on it for 10 minutes before finally getting it done.  Then I asked him if he knew how to untie it.  He said yes and showed me, so I had him tie it back again which took about another 10 minutes.  He recognizes that he is having difficulty and that it is taking longer than he expected but he doesn't give up, and that's what is so great about him.

Physically he is always improving.  I think those who visit him once a week or so can really see his progress better than us.  But it is very clear that now when he wants to stand he needs much less help than he used to need.  At this point he can virtually stand up on his own with no help.  Once standing, again, he needs help only balancing and reminders to keep his weight centered over his body.  His walking has also improved a lot.  His leg control is much better, although slow to respond when we ask for a certain movement, but he can and does get it done.  Once again to speak about his great attitude, he usually wants to get up out of the chair more than we usually expect.  On his own he'll decide he wants to stand and would probably stand if we didn't stop him.  (unfortunately he doesn't pay good attention to where his feet are and whether it is a good time to stand or not)  His strength with his arms and hands have also seen great improvement.  We are starting to ask him to do tasks with smaller objects in his right hand.  This is still difficult for him because his fine motor skills are not very good.  He continually reports of numbness in his right hand and this is probably a great reason why.  Nonetheless he is improving and is really coming back to himself.

So far I've been quite pleased with his progress and especially happy that he continues to improve.  If we find out more about moving back to Swedish we'll of course post an update.

Thanks,

Chad

Week by week Majid continues to improve and seems to be doing well in
Marionwood. Physically, he is getting stronger daily, both in his arms
and legs. While his left arm/hand is still the strongest, he is using
his right more and is able to control small movements with this hand.
During meals, he is able to eat with either hand, although they're
working a bit to get him to use his right more. The occupational
therapist is also working with him to slow down while he eats and to put
down the fork or spoon between bites. This helps him focus on his meal
and works on his dexterity as he has to keep picking up the utensils
over and over.

In terms of walking, he is doing a much better job of lifting his legs
and keeping them straight. His balance is also much better as he can
stand up straight with minimal help and has no problem sitting up
straight in the wheelchair. He's even able to wheel himself around a
bit without much help.

Mentally, he's also improving daily. His short term memory is still not
very good but we've all seen signs that it is definitely getting better.
While he may not remember that he ate lunch an hour ago, he does
remember bits about his therapy or people that have stopped by. It's
definitely not consistent yet though and the doctors at Swedish told us
it would be about 6 months before it's truly better.

Overall he has a great attitude about therapy/recovery and is doing very
well. Chad and I played blackjack with him last night and not only was
he able to deal pretty well, he was able to run the numbers and figure
out how he should play against the house based on the odds. He smiled
and laughed a lot while we were playing and was able to recall all the
rules once we gave him a hint or two.

The great thing about Majid is his dedication to getting through this.
Even when he's frustrated, he won't give up and every day when we leave,
Chad tells his dad the same thing he heard all the time growing up:
"Whatever they tell you to do, do more."

Thanks everyone for your support,

Anna

So Majid has settled into Marionwood and things seem to be going well.  He is in a shared room and somehow managed to get the bed by the window, which overlooks the courtyard.  Susan said the place was very nice and was impressed with the facility. 

I'm not sure what the status is on therapy today but I would imagine he'll start with the normal routine tomorrow morning.  I'm not yet sure what this routine is so if you are planning on stopping by, keep in mind he could be in the middle of therapy and you might have to wait for a bit.

For those of you that want to stop by, his room number is 208 and his phone number is 425-313-3809. 

We'll let you know how everything goes tomorrow!

Love,
Anna

Hi,

Hi All,

This weekend went very well for my dad.  He is continuing to work hard and make improvements in his rehab.  The first major improvement over a week ago is that he has now greatly improved his trunk control.  (Meaning control of his upper body while sitting/standing)  I will not say mastered yet because he does occasionally slump to a side and will need to be reminded to sit up straight.  However now he does full straighten himself using his own muscles and he generally is more aware of how he is sitting.  This has improved his ability to eat quite a bit, since he is using his arms less for support he is able to use them more for simple tasks such as eating.

In therapy his walking has improved.  The effort to hold him up is about 150% less than it was when we first saw him begin walking a week ago.  One therapist can hold his extra weight from the side while another therapist helps him guides his feet.  This means that he is picking up his feet and moving them as best as he can.  As I've mentioned before his legs tend to cross because of the muscles/tendons on the inside of his legs are really tight.  What happens is that when he lifts one foot, it generally moves towards his other leg and can often get caught behind it.  This is why the therapist is there to guide the lifted foot past the planted foot. Yesterday he walked about 30 yards with the therapists help and then he walked about another 30 yards using a special walker with wheels.  Overall he's doing very well.  I practiced doing some transfers yesterday.  This is the process of moving him out of the wheel chair and into bed, or from bed into the chair.  I was surprised with how easy it is now.  He really holds his own weight quite well and I hardly had to do much.

So this is his last few days here at the intense rehab facility.  By Wednesday we'll have moved to the Issaquah nursing home as my mom mentioned.  We're hoping for another smooth transition.

Take care all,

Chad

Hi All,

I just wanted to get a quick update in before the weekend.  My dad has been doing very well these last few days.  He has been making improvements and is looking much better.  He is cognitively making a much bigger effort when he speaks, he's using analogies to explain his thoughts.  Just yesterday, we had an old work friend of his visiting and he pulled me aside and, in farsi, was asking me if he was making sense or if what he was saying was clear.  This showed me he is aware of his speech difficulties and can therefore work to improve on it.  Unfortunately what he was saying really wasn't making sense or very clear, but after asking a few questions I could understand the analogy he was trying to use.  Overall that is progress, the self-awareness is the most important part and I've noticed he's been gaining much of that.  Similarly when he was eating dinner yesterday, he was having a difficult time gripping his spoon with his right hand.  He was dropping it every couple of minutes and at one point was outbursting in frustration as to why he was dropping it so frequently.   Although this is a small improvement, in my opinion gaining this type of self-awareness will really help his recovery because he can now take responsibility for his improvement.

On the other front, we still have not definitive answer as to what the plan will be for next week.  The one thing that is definitive is that he will be leaving by Wednesday.  He will either be headed to the nursing/rehab facility in Issaquah or to home.  My mom visited the facility in Issaquah and she was very pleased with it.  It was all very new and nice and the staff seems well qualified.  If we were to get a room here we would stay from 6-8 weeks or maybe longer as long as we are seeing improvements.  Otherwise if we can't secure a room then we will move home and do the rehab without walls.  The recommendations from Dr. Tempest have changed since a week ago, he thinks the nursing home is a better place for my dad where he can continue to improve, whereas a week ago he was recommending going home.  The reason for this is that I believe my dad did not make as much progress as they were hoping in this last week.  The therapy team was projecting improvements that my dad has yet to achieve so he feels it will be difficult for my mom or hired help to care for my dad at home.  Although he hasn't accounted for the fact that Andy and I will be home quite a bit more, and with the support of you all, I think it would be manageable.

Anyways, that's where we stand right now...

Chad

Hi all,

Today just a few notes, this morning he did wake up and remember where he was.  That was positive news, he didn't remember why he was in the hospital though.  Hopefully this trend continues and that he remembers more and more.  I think a stronger memory will greatly improve his rate of recovery.  Overall the speech therapist is impressed with his improvement and has noticed that his speech has improved significantly over the last week. 

Also today the doctor's and therapists will all meet to discuss my dad's current abilities and his room for improvement.  At this point we'll get a more certain answer to how long we can expect him to be in the rehab facility.  Overall the rehab therapy is going well.

Chad

Today my dad was finally removed from isolation. It seems to be mainly due to all of his infected sites have healed over, however we think he most likely still carries it with him.  So fortunately we do not have to wear the yellow gowns anymore, or gloves in order to see him.  As I mentioned, all of his infected sites have healed over, his feeding tube was removed on Friday and that's the one site remaining that isn't fully healed quite yet.  So at this point my dad does not have any more tubes whatsoever in him, or on him in anyway, essentially he's all back in one piece.

He has seen quite a bit of progress physically, he moves around in the bed quite a bit, he's regaining strength in both arms and really only shows slight impairment on his right hand.  He seems to have a tough time making a firm grip with all of his fingers on his right hand.  Otherwise his left leg is very mobile and his right leg has been moving slightly more involuntarily.  For physical exercise they have been getting him out of bed and standing him over a table.  Three people help hold him up, however this is great progress to have him standing versus the two people it used to take just to sit him up in bed.  Overall he continues to progress physically quite well.

Cognitively he's been making progress as well.  He tends to like to be involved in conversation and will join in much more frequently than he used to.  Unfortunately we have a hard time understanding some of what he says.  It's great that he's speaking more on his own more willingly, also his response time has decreased considerably, however unless he's answering questions that we asked his thoughts tend to be quite random.  And as we mentioned before his short term memory is poor and he needs to be reminded that he's in the hospital every morning when he wakes up.  The psychologist indicated that it would be 6 months before he starts to regain proper short term memory.


That's all for now,

Chad

Yesterday was a very good day in that Majid was able to move from a typical hospital room into a room on the rehab floor (6 East).  While I haven't seen it yet myself, the rooms sound quite nice and if anything, at least he'll have a new view!  In talking with Susan, it sounds like the staff up there is quite nice and as long as he's willing to try, they will continue to work with him, even if he can't handle the full three hours right away. 

A big part of being upstairs is that they'll be setting short and long term goals to work towards, rather than just coming by to work his muscles for a bit.  This will also help work on his memory as he tries to recall what he needs to work on.  Currently, he has a bit of short term memory loss, which is typical in many of these situations.  With work, he'll be able to bring it back completely and even in the past week it has improved quite a bit.

The only downside to him staying in the hospital is that he's still stuck eating the same hospital food!  Although this doesn't seem to bother him yet (I think he's quite happy to be tasting real food rather than just pudding and juice!) I think we're going to try and bring some light, healthy dinners in for him a few times a week.  If anyone has some suggestions on what you think he'd like, please feel free to email or comment!  Unfortunately, he can't have lettuce yet (choking hazard) or anything very heavy or with much oil but I think everything else is fair game so send your ideas our way!

Thanks all for your support in everything.  As far as visiting, I'm not exactly sure what the status is right now (or what the phone number is for the room).  With this therapy program, the rehab is certainly first priority so once we clarify the rules for visiting with the staff, we will certainly let you know (hopefully by tomorrow).

Thanks!

Hi all,

The good news that we have to report for today is that my dad has been approved to go to the intensive rehab starting either today or tomorrow.  Since he is still in isolation he will get a private room.  However right now they are waiting for one to open up.  As soon as one is available my dad will move up there.  This should be an interesting challenge for him, but I think it is the right move.  He has a very positive attitude and it's clear that he wants to recover fully as soon as possible.  When I ask him if they push him hard enough, he's always responded no, and when challenged by us he will always push harder or try more.  Hopefully the physical therapists will gain a similar relationship with him. 

Overall he's doing very well and is seemingly able to participate because he doesn't respond to questions when asked and will do exercises.  We just aren't sure whether he has the stamina to keep it up for a few hours a day.  Although they have said that they will tailor the rehab to his needs and give him as much as he can handle.  The small concern is that if he doesn't make enough progress than the insurance company is who decides to discontinue the rehab and will move him elsewhere.  Essentially that is the reason why they were hesitant to take him on earlier, they were afraid that if he wasn't strong enough that he would lose the privilege of being there.  Dr. Tempest, our new rehab doctor, and Dr. Huseby both thought he was ready so he will now be put to the test.

We'll keep you updated on how he's doing and when he'll be moving, thanks

Chad

Improvement continued through the weekend both physically and mentally with lots of therapy and visitors!  At this point, Majid is eating three full meals a day and seems to have all his taste sensations back.  Based on some comments he made a week ago, I think a lot of the food was tasting bland to him, possibly due to the medicine he was on.  Last night though he had some sauteed beef with vegetables and enjoyed it very much. 

For the most part, he can feed himself, mainly using his left hand but his right hand is certainly coming along.  In talking with his therapists, it sounds like part of his recovery will be getting the messages from his brain to his body, especially in terms of coordination.  Just in the past week he's gone from having little strength in his right hand to being able to squeeze my hand and hold things.  Everything takes practice and even when he gets frustrated, he still keeps trying.  He is definitely persistent in his work towards recovery!

In addition to his physical therapy, the speech therapist also came in this weekend and worked with him for a little over an hour.  She observed him eating lunch, had him read some words and numbers and also start trying to hold a pencil in his right hand (he wrote with his right hand before all this).  He was able to read the numbers and words pretty well and also had the correct response to what city and neighborhood he lives in.

Between the physical and speech therapy on Sunday, he was busy for over two hours.  Afterward, he napped for about an hour and a half but his stamina is definitely increasing and he even said he wanted to try for the intense therapy program on the sixth floor. 

Today, he'll be evaluated by other therapy doctor and hopefully by the end of the week he'll either be upstairs or at home with a therapist.  Either way, he'll be getting much more attention from the therapists soon, which I think will help him improve even more rapidly.

All in all, he is doing quite well, improving every day and working very hard.  Thanks everyone for your support and visits!   Please note that I changed the visitor status to request that you call the room before stopping by.  We think this will be easier than calling one of us on our cell phone as the person in the room will have a better idea of how awake/busy Majid is at that point.

Love,
Anna

Apologies for not posting this sooner--it's been a busy Friday all around.  Overall, things are going quite well though!  It really is amazing to see how much Majid has improved, just in the past seven days.  Last Saturday I spent some time explaining to him that he needed to keep eating "real" food so that they would quit using the feeding tube.  Since then, he's been eating more every day and even told Susan he was hungry for breakfast this morning.  His appetite is certainly back and he's even able to feed himself for a bit before his arm gets tired.  With more food he has more energy, which I think explains why he's been able to talk with Chad so much more.  

This morning, the therapy doctor was also able to come by and evaluate his status in terms of rehab.  As many of you have read, we've been having some issues getting the insurance straightened out and resolving where he'll go after this.  After seeing him this morning, the rehab doctor thinks there are two options:  a)  Have him go home for a couple weeks with in-home physical therapy or b)  If insurance doesn't work out, have him go directly to the intense rehab program on 6-East.

The fact that the doctor thinks he could be ready for the intense rehab program is very good news.  Right now, she thinks going home might be good for him mentally--to get out of the hospital setting for a bit and have a chance to get comfortable at home.  However, if he could go directly to the intense program that would also be very good.

All in all, it has been a very positive week and we hope this trend will continue.

Thanks everyone for your support!

-Anna

I hope you all are doing well! It's great to know that so many people haven taken interest in my father's help and are here to support.  Yesterday I was able to get into my dad's e-mail and I saw that so many of you guys had written him really nice and encouraging e-mails.  Thanks.

Now of course as I'm sure all of you have determined from the title, we are still "waiting" to hear back from the insurance.  The truth is my mom met with the insurance case agent and she was very much opposed to the in-home care.  The reason that she gave was that my dad is alloted a group of funds for in-home care, however if he uses them all up now, he will not have any left for when he moves back home permanently.  So with that in mind, the case agent is strongly urging us to use a nursing facility and she is going to call around and try to find an available bed for him somewhere on the eastside.  She was understanding of my mom's desire to stay close to home so she is taking all of that into account and researching our options.  In meantime we will be in the same room probably until Tuesday at the very earliest.  It sounds like the in-home care could still potentially be an option, however at this time we just don't know what the plan is.

Meanwhile, my dad has been doing very well.  After really encouraging my dad to speak these last few days it seems that he has fallen into the routine of spending time with me talking once I arrive in the evenings.  My mom says he doesn't speak to her that much during the day and is mostly asleep, but I guess I've managed to fall into his daily routine.  Yesterday when I showed up and as my mom was leaving he asked me what was new.  Later on in the evening when the nurse was in the room he asked me, "barnameh cheeyeh?" (What's the plan?) I asked him to clarify about what and he wanted to know when he was moving and to where.  So I told him the newest information that we had from the insurance company and that we might have to go to a nursing facility instead of home.  I asked him if that was ok with him and he said yes, then he told me that he would be ok with whatever I decided... but I'll defer most of the decision making to my mom.  Never the less he was speaking quite a bit to me, he told me in a few scattered (unclear mind you) sentences that he wanted to start feeding himself more, and we talked about his right arm.  He said it was numb but then I asked him if he could feel me squeezing it he said he could, at which point I think he was a bit happier when he realized it wasn't numb.  Couple other things I might add from last night, I noticed he was trying to put his milkshake( which he feeds himself) into his right hand.  He tried this for about 15 seconds but couldn't open his right hand wide enough to grasp it, but it was still nice to seem him trying especially because he was almost successful.  Lastly I spent some time with him going over some math, trying to quiz him on what he still remembers.  He did addition, subtraction and multiplication quite easily.  He did however have trouble reading the numbers off of the page.  I'm not sure if his glasses were not the correct ones, but I tried with and without.  I also tried writing larger so that he could see the, he did read a large 16 but couldn't read anything else off the page yet.  (We'll have to delve deeper into his sight abilities) He did do the math problems with quite a bit of ease, although he would take about 20-25 seconds to generate a response.  One problem 33 - 8 he could not do, but that one is relatively tough and he was tired by that point.  Also he didn't answer 10^2, but he did answer 10x10, so he probably has lost a little of the math vocabulary.    That's as far as I made it before he got quite tired and fell asleep but over all a very productive 2 hours that he was awake with me.

Lastly his rash is getting better which is great. They think it is one of the two drugs (ritalin or flowmax) but they aren't sure which and I'm not sure how they plan to find out. He's eating very regularly, 3 meals during the day, some snacks and nothing really at night.  Plus all of his drugs he can swallow in pill form now with no problems.  So overall he's continuing to make tremendous progress!

Chad

Hello all,

This will be a relatively quick update.  My dad is still doing well, unfortunately his rash is still persisting and so the infectious disease doctor will be in today to have a look at it.  They initially diagnosed it as a yeast based irritation but the powder/cream they put on it have not seemed to help.  Also we still have not heard a definite answer from the case manager as far as whether the in-home care will be covered by the insurance company.  We do however know that the equipment has been paid for by the insurance so the bed and the hoyer lift will be delivered tomorrow to our home.  As soon as we get a definite answer from the insurance company my dad would likely be able to go home that day or the day after.  Although right now with his rash we might prefer him to stay a few days longer.

Overall his spirits are good, I was able to get him to speak to me for a quite a while yesterday.  I reminded him that he needs to speak more and more so that he can improve at it.  After that he was becoming more conversational with me.  I asked him questions on which he would normally reply with 30 minute to an hour answers, for example whether i should buy a new car right now.  He put together two complete sentences, unfortunately his communication is still unclear and his thoughts come out a big jumbled.  But overall it's good progress I have never heard him string together so much in one go. 

Anyways that's the news for today, we will keep you guys updated on when he'll be home we are shooting for before the weekend.

Chad

Hi All,

Just wanted to make a quick post, as you might have noticed Majid's homecoming has changed from Wednesday to Thursday.  The reason for this is purely clerical, we have been unable to get an answer from the insurance company as to whether the in-home care plan will be covered.  We were expecting to hear back yesterday so we should definitely hear by the end of today.  Once we hear from them we can allow the furniture/equipment to be delivered to our home tomorrow which will then allow my dad to come home the following day.

My dad is doing generally very well.  Today they stopped the ritalin and flowmax because one of them appears to be causing a rash.  Fortunately he isn't irritated by it much however it is being addressed.  Also the speech therapist came by and asked him some questions which he was able to answer, (how many sons he had? our names?)  Also she fed him some huge chunks of food which he was able to handle therefore passing him to take his meds orally.  She approved him to take his medicines in pill form which is a very good improvement and will make things much easier on my mom once he's at home.  Also I should mention that his catheter had been out for a couple of days and he has been doing fine with that, so also good news there.  We are all looking forward to this transition home, we appreciate everyone who has helped and offered to help with this big change.

That is all for now, Take care!

Chad

All in all, the last couple days went quite well with quite a bit of progress in several areas.  First off, Majid continues to eat regularly and it eating more at every meal.  His meals thus far have ranged from an egg omelet to chicken and mashed potatoes or salmon and rice.  In talking with the nurses, it sounds like if he continues to eat well and get enough calories in his meals, they won't start the feeding tube back up.  This would be very good news as it's one less tube for him to deal with! 

In other news, he was quite talkative this weekend and wanted to know what the doctors wanted him to do and how he's going to get better.  I explained that the physical therapy is the best way for him to get better right now and after that, he spent some time trying to move his arms and legs around.  He even tried throwing a ball around a bit. 

Overall, things are going very well and with each small step we're getting closer to recovery.  Hopefully this week we'll be able to get him home and continue with more rehab.  We'll be sure and let you all know when that happens.

Thanks again everyone!

Love,
Anna

As usual, our weekend updates continue to be a bit sporadic.  I'll try to fill you all in on the last couple days.  This weekend has started out pretty well, with Majid eating quite a bit on a regular basis.  This afternoon he had some grilled salmon that he deemed "very acceptable" and has also had plenty of milkshakes and yogurt.  Unfortunately, right now his feeding tube is a bit clogged and they're trying to figure out when they'll be able to fix that.  Since he's eating solid food regularly now they don't consider the feeding tube absolutely necessary and so it's a lower priority than many of the patients here.  Hopefully by the end of the weekend they'll get it straightened out.

In other (very good) news, it looks like he will most likely go home Wednesday!  Susan has found a very good home rehabilitation company and they will be coming to the house anywhere from five to seven days a week to work on rehab with Majid.  Hopefully having him at home in familiar surroundings will help with his recovery.  Susan also said today that the rehab people can even take him to the golf course and help him work on recovering his golf swing!  All in all, it sounds like a very nice program.  Once he's stronger he'll have the option of coming back to Swedish for the intense rehab program or staying at home with the private rehab people.  We're not entirely sure what the plan is yet but we'll keep you informed.

Other than that, everything seems to be going quite well.  For anyone stopping by, I would really encourage you to call first as there are several times throughout the day where he is being moved or in therapy and it's not a good time to have visitors. 

Thanks again, everyone for your support and thanks again Mehdi for doing the posts for a few days!  (He's made it home safely, by the way)

Love,
Anna