Merry Christmas!

James came home for five days over Christmas.  He is sure happy to be home.  The day that we were leaving to go over and visit with James and bring him home to visit,  we had an amazing hamper delivered!  What a surprise!  Everything for Christmas dinner plus other food items,  plus gifts and stockings for us all! Our tree has never been so full!  It was the first Christmas since I was a kid that I didn't know what was under the tree!  We brought James' girlfriend with us to Vancouver and she also spent Christmas Day with us.  James was so excited to see her!  The hotel that we stayed in while we visited with James had an IHOP restaurant attached to it.  The food was fabulous!  I think I have a new favorite restaurant!  Too bad we don't have one near home.  We visited with Grampa Cam and Cindy and Paige while in Vancouver.  We had lunch and dinner with them, went to a movie and visited at their home.  It was a great day.  We saw the movie, Frozen.  It was great.  James saw it once already,  but he was super excited to see it with the family!  We travelled home on Christmas Eve with James.  We saw a pod of small dark colored whales on the ferry trip.  We stopped in Nanaimo and had dinner and a visit with gramma Ann,  then drove home.  We spent Christmas Day with James girlfriend, Rae Ann, and Nana came for dinner.  We also went over the Nana's house to see her mini Christmas village that she puts up every year.  We ended the day by driving along candy cane lane to see all the Christmas lights!   James also spent almost the whole day without his chair!  He was 11 hours out of his chair!  He even used his walker to go In and out of Nana's house.  That was quite a bit of walking! We all got super spoiled for Christmas!  We are so blessed to have such awesome friends and family!  

James got a new roommate on Christmas Eve at the hospital.  He is a man in about his 50s.  I hope he is as nice as the last roommate.  I am a little nervous about it.  The experience with the first roommate James had was so horrible!  James' usual doctor is back from hollidays and I look forward to meeting with her next week.  James has been trialling a power chair lately.  He has practiced with it 3 or 4 times now.  He is doing very well with it.  He is very careful,  and I suspect it won't be long before he is able to use it on his own inside the building.  He really enjoys the independence it gives him.  I have been very concerned that he hasn't been using his walker much while he has been there.  It sounds like both his physiotherapist and his occupational therapist will be spending time walking with him with his walker now though.  James had a scope of his throat done again recientely.  They were wanting to see how his naso-pharyngeal port ( a flap that opens and closes between the mouth and nose). Is working and how he is handling eating and drinking.  The port did close nicely a couple of times while he was making an "A" sound,  but it wasn't consistent. I am hoping that it is a sign that it is starting to work.  That port being able to open and close when he speaks is very important to the intelligablility of his speech.  He was able to also swallow a teaspoon of regular fluid as well as he swallows a teaspoon of thickened fluid.  So that is also promising.  He is still a choking risk though,  and still needs to be monitored when eating.

James and I will be going back over to Vancouver on Sunday.  I will stay there until the following Sunday.  It will give me a chance to catch up with his therapists  and his doctor. 

Calmer waters

James has been doing much better the last couple of weeks.  I still think that hie schedule should be busier though.  He does have a couple of new things added to his week.  He has hand class on Tuesday morning and on Tuesday evening and Sunday afternoons he has a speech volunteer working with him.  James usual doctor is back this week too.  I will meet with her after Christmas.  She is familiar with James and his goals,  and I am hoping that she can kick James rehab up a notch!  

James iPad will be replaced this week too!  He will be getting a new speech app on it to try out as well as his old touch chat app.  His replacement iPad is a mini and he is pretty excited about that.  It will be easier to pack around and keep safe!  The occupational therapist is making a pouch for it to go in that will attach to his chair.  

James will be getting another throat scope done tomorrow.  They are going to watch what happens when he eats, as well as when he talks.  His speech therapist wants to also discuss with the doctor if there are any intervention options to help with his speech.  

James now has a the social worker for his program checking in with him almost daily too.  Just to make sure that he is doing okay and that no one is giving him a rough time.  James is becoming more known by other patients and nurses though.  There are quite a few patients who talk to James now and keep an eye out for him!  

James is very excited about coming home for 5 days around Christmas!  His girlfriend has taken time off around that time too, so he is super excited to spend some time with her too! 

Tough few weeks

It has been a tough start for James at gf Stronge.   During the first week,  he got a roommate who was very verbally abusive and intimidating to James.  The roommate then stole James iPad with his communication program on it.  The iPad was retrieved from under the roommates mattress, and a couple of days later they moved James to a new room (across the hall) because James was refusing to go in the room and was sitting in the hallway.  the day after the move his iPad went missing again,  and this time they found the charger in the old roommates drawer,  but were not able to find the iPad.  So poor James has been the last few weeks without his communication program.  I am noticing that he is often just giving up trying to communicate more complex ideas to the nurses.  If it takes too much effort to get his point across he will just give up.  James' new roommate is a sweetheart though.  He is in his 40s and is from Columbia.  He speaks Spanish and now James wants to learn Spanish!  His new roommate was telling me that he is discharging in  by couple of weeks though.  I am nervous about who will be rooming with James next!  

I spent last weekends visit meeting with police about the iPad,  and generally trying to get a clearer picture of the story of the iPad theft.  The hospital won't consider it stolen though,  only missing.  Security says that since no one actually saw the guy steal the iPad it is deflamitory to say it was stolen. He says that even though it was found the first time under the guys mattress,  that doesn't mean he put it there.  The argument would be, what if the guy was framed.  Good grief !  Not sure what the police have been able to do,  and if I wanted a copy of the police report I would have to apply for freedom of information act,  which is a lengthy and expensive process.  It does look like the company that supplied the iPad will replace it for him,  but there are lots of hoops to jump through to make that happen.  I spent this weekend working on paperwork to get the iPad replaced.  I am hoping to have it replaced before Christmas.  

There was a meeting on Thursday to discuss James progress so far.  I caught wind earlier in the week that the talk was to discharge James because James was wanting to go home.  I talked to James' physiotherapist from Courtenay, who wrote an awesome e mail to the new physiotherapist as well as the physio and occupational therapists who worked with James during the summer.  Well,  I think he sufficiently stirred the pot!  When I arrived they were all hopping,  and the doctor filling in for James' usual doctor had given James his cell number, and was communicating with him via texting!  He convinced James to give it a good try and stick around.  A review meeting is now set for January 20th.  At that meeting either a discharge date will be discussed or another review meeting set.  Basically what we heard is that James is working hard and cooperating despite being homesick.  He is using his right hand a lot more,  and I have seen a significant change in the function of his right hand.  His speech is coming along,  he is quite a bit clearer if he plugs his nose.  He is scheduled to have another scope done on the 17 th of this month.  He is also sitting a bit straighter in the last week or so too.  I told them that James needs to be busier too.  When he is bored,  he gets very homesick.

I took James to a follow appointment with the Neuro Opthomologist yesterday.  He saw some positive changes in James eye function in just under 2 months since he saw him last.  He said that on their own each of James' eyes works quite well,  they just don't work perfectly together.  He wants to follow up with more testing in 6 months.  He felt that patching one eye or the other might assist James in some activities where there is still some double vision.  He also suggested tinting the lense of his glasses on his right eye.  That eye is light sensitive since the pupil stays a bit more dialated than the other.  He does not feel that James is a good candidate for surgery since his right eye has multiple issues.  

Gf Stronge

James has been at gf Stronge for almost two weeks now.  It has been a tough couple of weeks though.  On day 5 he got a roommate.  His roommate was walking and talking, and very nasty to James.  When James came into the room he would swear at him and started calling him names.  He also stole James iPad with his communication program on it.  They found it under the roommates mattress .  It got to the point where James wouldn't go in the room while the roommate was there.  He would just sit in the hallway.  They moved James to a new room last Thursday.  His new roommate seems to be a really sweet guy.  He is in a wheelchair too,  and he also has some communication issues.  He is able to speak better than James can though,  and often let's the nurses know what James is trying to say!  James iPad went missing again after they moved him though.  The charging cord was discovered in the old roommates possession,  but they haven't been able to find the iPad.  So poor James is trying to get along without it for now.  The society that provided the iPad has said that they will provide James with another iPad,  as long as the hospital staff can figure out ways to increase the security around the iPad.  James has been having a hard time with the fact that they won't let him go to bathroom on his own either.  He has to call a nurse to go to the bathroom.  While his transfers are supposed to be just supervised,  when he gets a new nurse,  they seem to feel the need to actually transfer him themselves,  which is very frustrating  to James because it is difficult to communicate with them.  I did get an email today from his OT that she is going to let him get in and out of bed unsupervised though.  She still wants to work on the bathroom transfers. 

I also got a call from a fella who works on the recreational therapy team last night.  He is going to start taking James out a couple of days a week !  Today they are going to go and get chocolate cake at white spot.  They are also planning on going to the movies on another day.  

James has an appointment with the Neuro Opthomologist next Friday, and I am going to go over early to Vancouver, so I can go with him.  It is to go over the results of some field of vision tests that they did almost two weeks ago. 

Back at GF Stronge!

James went back to GF Stronge last Thursday!  It was hard leaving him there to come home. I am sure he will do fine,  but it is hard not to worry about him!  He got his schedule yesterday.  I am glad that it looks like they will keep him busy!  He has Occupational therapy at 9 am,  Physio at 10 am,  and two half hour speech sessions at 11 am and 2 pm.  They are also talking about putting him in pool therapy twice a week and one session a day with a rehab assistant to work on his walking. As well as getting him involved in music therapy and art therapy.  He will be going to the recreational pool session on Wednesday nights too.  There is also wii games nights on Mondays and Thursdays.  Monday night games night is on the spinal injury floor,  and I understand that there are a couple of young guys there. I will be going back over to visit James on the weekend.  I will probably go over on Friday night,  and come home again on Sunday night.  

Here we go again!

We got the phone call from GF Stronge about James going back for more therapy!  He checks in to the hospital next Thursday!  He will be an inpatient for the next few months.  My plan is to go over and visit with him on the weekends.  James is actually quite excited about going back,  and says that he is looking foreword to hospital food!  Lol!  He will be working with a new set of therapists,  so I am looking foreword to meeting them all on Thursdays and Friday next week.  It has been a busy week, with trying to get organized to go back to Vancouver.  I will blog more after we get to Vancouver !

October 2013

We took James over to Vancouver a couple of weeks ago for a Neuro Opthomologist  appointment.  He has to have some more tests on November 15 th to figure out exactly how much double vision he has,  and how well his eyes are working together.  I am amazed at how well he actually has adapted to his vision changes and is able to tune out one of the images when he starts to see double.  The doctor said that surgery is possible to correct the double vision,  but since he is still healing there is no rush on making that decision.  The longer we wait the better.  He also feels that the damage to the nerves around James' eye are due to trauma to the eye and not due to the brain injury.  James did great during the assessment and used his voice quite a bit to communicate with the doctor.  

While we were in Vancouver we also stopped in to see the coordinator at GF Stronge.  I was hoping to get an actual date for when James goes back as an inpatient.  She said that she should know better after November 5 th.  They will have a meeting to discuss bed availability on that date.  She did say that it would likely be the week after rememberance day.   When he does get a bed,  I will go over on The  weekends,  but I won't stay over there during the week.  

James is doing well at his day program.  His worker is great,  and they seem to get along well.  He is excited about wearing his costume to his program tomorrow.  He loves Halloween and is looking foreword to handing out candy tomorrow night.  

James is doing better at walking all the time.  He definitely is still making good progress.  Slow and steady!  I can feel quite a difference in his balance when I walk with him.  He is walking laps with his walker around the hallways of the day program building everyday.  He walked around 2 and a half laps yesterday!  We did have to bribe him with root beer to increase his number of laps though!  

Home again, home again....

It feels so good to be home again!  Last Friday was James last day at the GF Stronge intensive day program!  He was so excited to be going home!  He woke up at about 330 am. and transferred into his chair while I was sleeping.  I was woken up by James saying, " hey mom! " from his chair at the end of my bed.  He briefly argued with me about whether or not it was time to get up,  then he went back to bed.  It was a busy day of packing up and saying goodbye to all his therapists.  When he goes back again he won't have any of the same therapists.  His OT said that he will touch base and consult with his OT and PT when James comes back for the in patient program in November.  We don't have an exact date for that program to start yet,  but the doctor was pushing for mid November.  

We are well into our routine at home now.  I have gone back to work and James is going to a day program, 5 days a week.  His one to one worker picks him up at 930 Monday to Friday,  and brings him home at 330.  He does his speech  and physio excercises with her and they go swimming twice a week,  to adapted karate one a week,  and she takes him to physio appointments three times a week! They wil also check out the local gym and possibly use the stationary bike there.  He is a busy boy!  There is also a worker who comes in each morning and helps him keep on track with his morning self care.  They will also do a few walking and balance excercises with him too. 

James private OT and the community PT came by this morning to assess his walking with his walker and his transfers.  We are going to take out his bedside transfer rail.  The PT said she was very impressed with the difference in the fluidity of his movements and that his walking and transfers have improved a lot since she saw him about three months ago.   

James finished his t shirt that he was working on in art therapy.  It turned out wonderfully!  Unfortunately red paint that he used on it didn't set and as soon as it got wet the red parts disintegrated!  Luckily I took lots of pictures of it and I think we can transfer a picture of it on to a black t shirt for him.  He put so much work into that t shirt and was so proud of it.  

One week left!

One more week until we sleep in our own beds and see the rest of the family! I am so looking foreword to getting home!  

James had two days of pool therapy this week.  The physiotherapist at the Monday pool therapy was great.  She did a lot of working one on one with James.  She had some great ideas and James worked really worked well with her.  We didn't go to the pool on Wednesday night this week,  so he just had the two days of pool this week.  On Wednesday night James' amazing rehab doctor was doing a session about traumatic brain injury.  James and I decided to skip the trip to the pool so we could go to that.  It was great.  We met some lovely people who are going through similar experiences,  and learned a lot about brain structure,  what happens in a brain injury and about rehab options.  It was well worth the time! 

On Wednesday morning there was a meeting of the physiotherapists to brainstorm about ideas to help James.  It was great,  and James handled it all very well.  There were about 10 therapists there and at times they were all around him talking,  telling him what to do,  and they all had there hands on him.  He took it all in stride.   A year ago that would have been impossible!  They came up with different ideas on how to strengthen some of the muscles that are showing weakness and making it difficult for James to walk.  Basically it was decided that his hip muscles need to be strengthened.  

On Thursday evening James and I were invited by a family member to attend an interactive play at UBC.  It was very interesting!  A skit was preformed once,  and a story brought to a climax,  and then it was repeated.  The second time through audience members would yell stop at what they saw as a pivotal part of the play, and they would go up and take the place of a character of their choice.  Then they would change something about what that character was doing to try to achieve a different outcome.  The rest of the actors would improvise and play into the change.  It was very entertaining,  and a great way to open dialogue about some difficult situations.  James and I both enjoyed ourselves a lot!  

We met with the psychologist today to go over test results from the cognitive assessment that James participated in a few weeks ago.  She said that James' vocabulary is at a normal level for his age.  Since he doesn't speak very well at this point they had to adapt the tests,  but through typing and signing he proved that he has a great vocabulary,  it is just sometimes difficult for him to express that because of his limited speech.  His comprehension is great too.  His working memory or short term memory is good,  but he has trouble storing longer term memory.  One of his biggest challenges is attention.  He is very easily distracted.  It seems like a lot of the learning difficulties that he had before the accident are amplified.  

There was a meeting back home this week with the community groups that are providing services for James in our own community.  They have come up with a wonderful plan for the interm when James and I get back home . He will have home and community care come in and help him get ready in the morning, five days a week, and he has a worker from a day program come and pick him up after that.  He will be with his day program worker until 330 in the afternoon.  She will do speech excercises with him,  take him to physio appointments,  take him to the pool for some pool therapy 3 times a week, and take him to karate once a week!  She will also help him access community events that he is interested in.  He is going to be a very busy boy when we get home! 

We have gotten word that James has been officially accepted to the adolescent and young adult inpatient program!  He will come back to Gf Stronge as an inpatient in mid November!  They will work more on his speech,  becoming more independent getting around without his wheelchair,  and explore his ability to access the community.  We are so lucky to have the opportunity for James to get more official rehab!  He must be one special guy,  because so many professionals are bending over backwards to help him here!  

James will be seeing ear,  nose and throat doctor next week to go over results from his  hearing assessment that he had a few weeks ago.

 There will be a discharge meeting on Tuesday to make sure that James'  transition home goes smoothly. There will be some assessments that need to be done when he is home.  We will need an occupational therapist to reassess how he gets around the house and give us some ideas about how to facilitate him being able to get around the house without his chair. 

James girlfriend came and visited last weekend. James wanted to take her to the aquarium,  so we  went to the Aquarium again.

James will be working hard on finishing his art therapy project this week!   The big reveal should be next weekend!  It is going to look awesome!

Two weeks left!

James has been at GF Stronge for 6 weeks now!  Wow,  time flies!  James has made lots of progress while he has been here,  but he still isn't quite as independent with his mobility or his speech as I had hoped.  His speech has definitely improved.  He just needs someone to supervise his transfers if he doesn't have a pole or rail to help him.  He is now completely independent at preparing his toothbrush and brushing his teeth.  He is also only needing a bit of help to transfer to the bath bench. I still wash his hair,  but he washes and rinses himself.  His balance and core strength has improved,  but he still requires a standby assist with his walker.  I went and spoke to his doctor here about it this week.  I talked to her about the possibility of transferring James to Ponoka,  Alberta for some longer term rehabilitation.  She suggested another option though!  She said that she would talk to the team about James coming back as an inpatient for another two to four months!  The whole team agreed and she is going to organize him coming back in November!  I will probably come over on the weekends to visit him.  He will be part of the adult and young adult program,  and will be mostly with younger patients.  I am hoping that he makes a few friends too!  

Next Wednesday we will be going in to physio a bit early to be part of a meeting where the other physiotherapists will put their ideas together on different ideas on how to help James.  I am really looking forward to this meeting!  James has been on the body assisted treadmill some more this week.  He has been pretty consistent at getting up to the goal of 3 km/ hr speed and is walking for a total of about 15 minutes now!  His occupational therapist and physiotherapist got together for a session together with James on the treadmill.  It was pretty cool.  Another two therapists joined in and James covered the most ground yet!  He went a total of 700 meters!  Almost 3/4 of a kilometer!  He was totally exhausted afterward,  but he seems to recover quite quickly!  The doctor was nearby and came to see what was going on because she could hear James' occupational therapist cheering James on.  It was quite the party going on!  Next week James is going to do some work with the physio departments big tall walker.  A big goal is to get him independent on his walker,  and part of that is getting him to stay more upright.  The tall walker will help with that goal.  We will also do some work with the one hand on the rails and the other hand using the cane.  James' eventual goal is to walk with only a cane someday!

Starting next week James will be getting 2 days a week of pool therapy in the pool at Gf Stronge and one night a week at the Stan Stronge pool with recreational therapy.  That is a total of three days a week in the pool.  I am happy about that.  

His speech therapist was pretty excited this week because she is starting to hear some fairly consistent "k" sounds.  This has been a very difficult and elusive sound for James.  He now has a list of "k" sounds to practice!  He has moments where his speech is much clearer now.  I am not sure that just anyone would understand much of what he says,  but those who hear him speak a lot are understanding him more!  I am trying to encourage him to say "hi" to more people instead of just nodding to them.  He did pretty good with it today!  I often get him to head to class either without me or a bit before me.  His psychologist stopped to talk to me in the hall today and she was excited that when she passed James a minute before,  he said a very clear and loud "hi" to her!  

The t shirt that James is painting in art therapy is coming along very nicely!  He has the back finished and is now painting the front.  It is going to look so cool!  He goes and paints it for about an hour a day Monday to Thursday.  He loves it and is so proud of his work!

We went to the aquarium with James' Auntie Paige last weekend.  We had a blast as usual!  James loved the 4D theater.  We also got to see the octopus being fed!  It was amazing!  The octopus was changing color depending on where in the tank he was!  He went from purple,  to looking like he was covered with white barnacles, to all white.  It was fascinating!  We are heading back to the aquarium with James' Girlfriend tomorrow!  We are getting lots of use out of the yearly pass for James!  

Another busy week!

James' community NeuroPhysiotherapist from back home came to see him in his physio session at GF Stronge today!  He did awesome on the treadmill today!  He increased his time to a total of 14 and a half minutes, and they got his speed up to 3 km/hr!  That has been the goal,  because the movement for walking is actually stored in the spinal cord.  Since James spinal cord was not damaged,  that part is still intact.  That piece kicks in at about 3 km/ hr and walking becomes more automatic at that speed.  

Speech is trucking along,  slow but steady progress.  As there is only 3 more weeks left,  I am starting to think about what things will look like when we get back home again.  I am feeling concerned about the lack of accessible speech therapy back home.  He will need speech therapy for some time yet,  and twice a month is not enough!  

James got to trial a few three wheel bikes this week.  There was one that worked really well for him.  It was slightly recumbent with steering on the sides.  He just whipped around the figure eight at GF Stronge!  

The Occupational therapist that James worked with the first week,  came back from vacation.  They are working on the function of James right hand.  James had a new hand splint made last week and he is now wearing it at night.  It is working out great!  James will be going to OT at a different time starting next week,  and that will open up pool therapy twice a week for him!  On Wednesday nights we go to the Stan Stronge pool with recreational therapy,  so that gives him pool therapy three times a week!  

James got to go to wii and games night with the inpatients last night.  He played Mario cart a bit and also played wii sports resort.  A volunteer played with him and he really enjoyed himself.  He will go to that on Monday and Thursday nights until we leave.  He is still going to wheelchair sports on Tuesdays, and art therapy Mondays to Thursdays.  He has something to go to most nights of the week now!

Last weekend the family came over and we went to the aquarium.  Also James' gramma came over and his great auntie Jane and uncle Leslie came up from Washington!  We had a lovely picnic at queen Elizabeth park.  It was a great weekend!  

The end of the first month at GF Stronge!

Wow,  we have been at GF Stronge for almost a month!  

James is working on increasing his stamina on the treadmill and the stationary bike.  He is now doing 15 minutes on the bike,  and 12 minutes on the treadmill.  It was tough staying focused when he was on the bike today though.  There were a couple of patients that we have only ever seen in their wheelchairs who were up walking today,  and James kept losing focus because he was watching them,  must admit I was too!  I am praying for the day that it is him walking unassisted!  Next week James will start having an extra hour of physio with a rehab assistant everyday.  His occupational therapist will also be back from holidays and he will be taking on a more physical piece too.  He will be working on James' right arm and some more pieces around movement and balance.  

I asked the doctor about the use of the gym,  and she said that she just doesn't want him going to the gym alone,  so she is totally fine with me taking him.  We have started Going back to the gym again, but James has decided that the he doesn't like some of the equipment  that he is assigned to.  He will still use the arm bike, so we are still going and using that.  I think that the physiotherapist is going to show us the stationary bikes tomorrow.  James really enjoys the stationary bike,  so that should work out well.  The doctor gave James some more Botox injections in his right arm, and also his right shoulder .  We are seeing some significant changes after just a week.  The new meds seem to be helping too.  He is moving a bit quicker,  and his tremor has settled a bit.  It is hard to know if the tremor is settling because of the meds or the Botox though.  It may be a bit of both! 

The wheelchair company came and moved the wheels on James chair forward last week.  It is definitely easier for him to propel and me to push!

James started to make a T shirt in the craft room this week.  I discovered that I need to leave when he works on the shirt,  because if I am there he just tries to get me to do it!  They are open Monday to Thursday afternoons,  so he will just go for a short time each day and work on it.

James has been going to wheelchair sports once a week too.  He likes the arm propelled sports chair. They are fun and they turn on a dime!  He isn't too interested in the sports end of it though.  They were playing netball and he found it a bit overwhelming.  They crash the chairs into each other and are very competitive.  We will probably just go and play around with the sports chair in the hallway next week.  He is also still not great at catching a ball.  He can do a good bounce and throw though.

At occupational therapy he has been working around the kitchen.  He just is still a little shakey when standing to reach things in the kitchen, and is very easily distracted.  He made mashed potatoes himself yesterday, and enjoyed them for dinner!  I took him the full hour to make them,  but he did it with very little prompting.  Today they started a new nighttime splint for his right hand.  It will need a bit of tweaking tomorrow,  but hopefully we can start using it more this weekend.  

James had a very thorough hearing assessment done last week.  He does have moderate hearing loss of higher frequency sounds in his right ear.  It looks like everything is structurally sound,  so she figured that it was due to nerve damage.  He may have another appointment with the ear, nose and throat doctor, but we haven't heard back about that yet.  

James was approved for a handy dart visitors pass,  so that will make it possible for us to get out.  

Tonight we are meeting with a volunteer at the music studio over at the hospital.  

The family is coming to visit this weekend,  so we are super excited about that.  Gramma, Aunty Jane and Uncle Les are coming to visit on Sunday too!  We will have a busy long weekend!  

 

Gf strong, the aquarium and church

James had a busy week at GF Strong.  Monday and Tuesday were full of physio,  speech and occupational therapies.  We dropped into the adapted music studio on Tuesday and James played around on the electric drum kit, and electric keyboard.  He also showed off his Irish drum.  He will be meeting with a volunteer later this week.  James had a couple of great physio sessions on the treadmill this week.  By the end of the week he had increased his average speed from 1.1 km/hr to 1.4 km/hr,  increased his time from 6-8 minutes and so also increased his distance travelled. Earlier In the week the physiotherapist had to help guide James left foot on the treadmill,  but by the end of the week James no longer needed that help.  His stride length has also increased. I got the okay from the physiotherapist to take James to the adapted gym on the floor this week.  On Friday though, the doctor said that she doesn't want him using the gym without a physio assistant.  So the physiotherapist has assigned him an assistant for a half hour each day and they just use the physio gym.  I am hoping that the doctor will reconsider this week.  I think that she probably just doesn't realize how much I do with James.  The physiotherapist was going to find out why she wasn't comfortable with it,  he told me to keep the paper that we were recording what equipment he was using, so I think he is fairly confident that she will change her mind.

James also started on a new medication this week that we hope will help increase his reaction speed and maybe reduce his tremor.  The doctor feels that his dopamine levels are low,  and this med should help boost them.  She figures that he only needs to be it for a few months.  He will also be getting some more Botox injections in his arm this coming week and a new splint for his arm.  

The wheelchair expert occupational therapist came to take a look at James' chair this week.  They are going to get the wheelchair company to come in and move the wheels on his chair forward.  This will make it much easier for him to foot propel since his weight will be over his wheels instead of his wheels being behind him.  

James had his appointment with the ear nose and throat specialist at the voice clinic this week.  They did a scope of his vocal chords.  His vocal chords are coming together, but his left side looks like it is having to go further than his right to make them meet.  They are meeting though,  which is good news.  The muscles are still a bit weak and a there is a bit of a tremor on the left side of his throat.  So far we have not seen any sign of the tremor affecting his voice,  but that is probably because he still isn't holding any sounds for any length.  We are still working on better breath support so that he can make longer sounds.  

James and I were both feeling kind of bummed out and home sick yesterday,  so we decided that we needed to get out!  We caught a cab to Stanley park and went to the aquarium!  We both enjoyed it a lot!  James favorites, were the dolphins,  the porpoises and the beluga whales.  We spent the whole afternoon there.  It was great!  One of the porpoises is a major ham,  and will pose at the glass for photos.  His name is Jack.  

Earlier in the week,  James and I decided to explore the neighborhood  a little and we found a Chinese restaurant up the street.  We went in and ordered and then waited to take it back to our room to eat.  As we were waiting for the light to change to cross the street,  I turned around and there were a pair of missionaries from our church.  I said to them,  ". Hey guys,  I need to talk to you!"  I might have made their day,  they don't often get greeted like that.  It was interesting because this isn't their area,  and they are Spanish speaking missionaries.  They actually missed their stop on the bus and were several blocks away from where they were supposed to get off.   They gave me a number for the missionaries for this area,  who gave me a number for the senior couple missionaries,  who talked to the relief society president,  who found someone to give us a ride to church.  Kind of a round about but we got a ride to church!  It was a very nice Sunday,  and we saw a family who moved away from Courtenay last year!  It was great to see some familiar faces!  

Next week James has an appointment for a proper hearing assessment.  He has been complaining that he doesn't hear very well with his right ear.  I will update on the next entry about how that went.  We are hoping to go home for the weekend next weekend if we can find a ride to the ferry.  Then hopefully the family will come visit on the long weekend!  Another busy week ahead!   

GF. Strong!!!

We are at GF Strong!!!  We arrived a week ago, and James is doing awesome!  What an amazing place!  We are staying at Easter seals house which is less than a block and a half away.  Another bonus is that Safeway is just across the street too.  There is no way I would drive in Vancouver,  so Mark dropped us off and he went home to take care of things on the home front.  There has been some growing pains at Easter seals house.  I so miss the staff at Jeneece place!  What a blessing Jeneece place is to families at Victoria general hospital!  However,  we are lucky that they will let us stay here the whole time that James attends Gf strong.  It is so convenient to be so close to Gf strong.

During the first week of therapy the therapists unanimously decided that James would benefit from 8 weeks of therapy,  so we are here for 8 weeks!  

James' schedule starts at 9 am and right now he finishes therapies at 2 pm.  He worked so hard in physio today!  He is watching Star Wars movies in his room right now.  In physio he did 10 minutes on the stationary bike,  and then 8 minutes on the treadmill. Then he did a few minutes on the hand bike thing. It is basically pedals for your hands and arms.  He had a hard time finishing the last couple of minutes on the treadmill,  but he pushed on and finished!  I have noticed a difference in his gait with his left leg already now.  His knee is hyper extending much less.  Although it gets bad when he is tired.

Today he had an appointment with the physiatrist,  Dr. Yeo.  She is lovely.  She will be seeing if a Neuro Opthomologist will see him and properly assess his eye site.  She is also thinking that some more Botox may be positive for his right arm.  She is going to ask for his MRI to be sent from Victoria general hospital too,  and she will go over it with us.

Speech therapy is going good too.  He is already showing a tiny bit of improvement in some sounds.  I have noticed that a few times he has been able to make a t sound without plugging his nose.  They are working on getting his m sounds a bit crisper too.   The speech therapist is going to come with us to an appointment at the ear nose and throat specialist on Wednesday too.  They are going to scope James' vocal chords.  There is some concern that there may be some damage to his chords.  We are hoping that the doctor will have some suggestions that might help with his pronunciation and effort with his speech.

James has also been spending some time with the psychology team.  They are doing a thorough Neuro psychological assessment.  I am hoping that we will have a better idea of his strengths and weaknesses,  and whether he can be on his own during the day at all or not.

James' Occupational therapist is amazing.  Unfortunately he is away on vacation until September now . So he has another OT filling in.  Morio,  his original OT has a lot of training around movement,  and he did some amazing stuff with James right arm last week.  He has another therapist,  Carly , right now.  She is working on some changes to James chair and a splint for his right hand.  I have discovered that James has outgrown his seating.  The seat and the back have too much support for him and are actually hindering his progress!

July 4, 2013

Yesterday was an exciting day!  The feeding tube came out!  As we were waiting for the doctor,  James said that he was really nervous,  then he said terrified.  When the doctor came in she told him that it is really more of a lot of pressure than pain,  he wanted to hold my hand and then it was done!  He didn't even get time to react to it!  He said that it really didn't hurt and it wasn't a bad as he thought it would be.  We are all so happy to see that tube gone!  No stitches or anything.  The hole just collapses on itself and is pretty much healed up in just a couple of days!  The site looks great today and we just left the dressing off today.  After the tube was taken out we went up to the floor where James was for 3 months when he was in the hospital here.  We saw lots of familiar faces and James enjoyed showing off for them!

We went camping for the first time in two years this past long weekend.  James enjoyed himself and spent very little time in his chair.  The fact that it doesn't fit into the trailer helped!  He went canoeing and did some awesome paddling.  He practiced some kayak paddling in the lawnchair on the beach too.  I am going to do some exploring specialized kayaks to see if we can get him a kayak with pontoons.  He has been talking about how he misses kayaking. 

We are getting excited about going to GF Strong in August!

Well, it has been an exciting month!  Just 6 days after having his appointment with the specialist in Vancouver,  we got a phone call from the GF strong intensive day program for acquired brain injury. James has been accepted into the program for the month of August!  James and I will be staying at the Easter seal house just 4 blocks from the hospital,  and James will get intensive rehab 5 days a week,  4-8 hours a day,  from August 6 th until August 30 th.   They will decide how long his days there will be after we get there and it will depend on his stamina.    We have decided on three main goals,  being able to take some steps on his own,  using speech as his main way of communication and more clarity to his speech,  and regaining more function of his right hand.

In physio James has been working a lot on his right hand and they have discovered that when James visualizes the tremor quieting, it does.  I have noticed that during the day,  sometimes his arm hardly tremors at all!  We see the tremor a lot more when he is tired.  He is also getting much better at weight shifting for walking,  and is leaning on me less when we walk together.  I am super excited to see what he can accomplish after the intensive rehab!

James had his appointment at GF strong on Friday.  The physiatrist ( Doctor of rehab medicine). Was a really nice guy.  He had  obviously read up on James,  and there was an email from James' physiotherapist on the desk.  He said that he was very impressed with how far James has come,  and he was actually doing too well to qualify for many of their programs.  He is going to set him up with the GF strong outreach team and they will contact us and the rest of James' community rehab team in the next month.  They will mainly be there to educate and support the team that is already set up in our community.  He is also going to see if there is a possibility of a short burst of day program rehab at GF strong this summer.  He said that he may not qualify,  so he is not sure if he can get that to happen or not.  It would be a 3 or 4 week program,  3 hours a day for 5 days a week.  James and I would have to stay in Vancouver for that time.
The doctor said that he sees James in a couple of years being ready for independent living, or needing very little support to live independently!

James' speech is coming along nicely.  It is still difficult to understand,  but he is becoming more willing to use his words first and sign only if we can't understand.  As he is practicing more it is becoming more intelligible.  His walking is coming along nicely too.  He is still a ways away from being able to walk on his own,  but he is making steady progress towards that goal.

I can't believe another month has gone by!  April has been very busy.  We are busy changing James care while I am at work over to home and community care.  They are covered by Vancouver island health authority so now that financial piece is not coming out of his rehab funding through ICBC anymore. That means that the funds will be preserved for Neuro physio and speech therapy.  It is training week this week for the new team,  and they are coming out to meet James tomorrow and Thursday this week.

James and Mark went down to Nanaimo for James to get his Botox injections in his arm.  I am hoping that we will see some more changes for the good in the use of his right arm in the next week or two.

The speech therapist has given James a list of words to practice every day.  It is a pretty big list!  About 50+ words long!  His improvement has been awesome.  He is quite easy to understand when he wears a nose plug.  He is still losing a lot of air through his nose when he speaks, and there are many sounds that can do only when he plugs his nose.   Depending on what he is trying to say, he can even sometimes get two or three words out with out breath.  His speech therapist is super excited because she says that it is rare for her to see progress happening so quickly!

James appointment at GF strong rehab is in just under three weeks!  I am very eager to hear what they may be able to offer!

March 2013

 Wow, it has been a while since I updated the blog,  and James has been nagging me to update it.  It might be almost time to pass blogging on to him since he has been nagging me to do it!

James still has his feeding tube,  but we are not using it.  He was upgraded to a minced diet at his last swallow assessment.  He is drinking thickened liquid, and boost.  He has a pretty good appetite now too!  He enjoys muffins and soft cookies as well .  I am mixing his meds with chocolate pudding and he just takes that by mouth.  We are flushing some water through the tube to keep it healthy and patent,  and I am hoping it will be removed this summer. He has been able to eat kinder surprise eggs over this Easter weekend, which he has greatly enjoyed!

He has made quite a breakthrough with his walking lately too.  We have put the walker aside for the moment and he is walking with me on his left elbow and a cane in his right hand.  His major problem with walking right now is that he relies very heavily on his left hand to "save him ".  When he using his left hand for anything it sends signals that overdo it.  And it makes it difficult for him to get his weight over his right leg to move his left foot.  His physiotherapist made some changes to his wheelchair that made a big difference to James being able to get his weight shifted to the right. It is amazing what a few simple changes can do!  He put a wedge under the left side of his seat cushion to shift his weight over to the right hip when he is sitting and took out the left arm rest so he isn't leaning on it.

Speech therapy is going really well too.  James is saying " hey mom" to get my attention now.  He said " happy" and his therapist said " birthday" To me on my birthday!  He now sees the speech therapist once a week.  He said "stop" quite clearly last week,  so we are trying to work that into daily use too.

He is going into the bathroom with his chair and getting changed independently now.  He also gets in and out of bed himself now too.  He has taken on getting one of us to help him with his morning exercises.  No more reminding him to do them,  he reminds us!

We have a couple of big appointments coming up.  The physiatrist in Nanaimo is going to give James  a Botox injection in his right shoulder at the of April.  I am hoping that this will make it easier and less painful for him to use his right hand and arm.  In mid May we are going over to Vancouver to see a physiatrist from GF strong ( Neuro rehabilitation center). I am hoping that he will be accepted to have some either in or out patient services there over the summer.

Here are a few words from James about his progress this month!

January was definelty a marathon month for appointments!  Glad that is done!

 James now has a nighttime resting splint for his right hand.  He also had injections in his right arm and shoulder to relax the muscles that are working overtime.  It seems to be helping in some areas.  His thumb and his wrist are much easier to move and I have caught him using that right hand a bit more.

 There is now an exercise therapist coming to the house and working with James twice a week.  He has physio three times a week,  so he has an awesome 5 day a week physio scheduel now! 

The swallow assesment went well.  He has trouble drinking from a straw,  but thick puree,  and liquid from a cup went well.  He is down to 1.5 cans of tube feed a day now,  although I am using the other 1/2 can a day instead of milk on his weetabix or oatmeal in the morning.  I am hoping that I can have him drinking a cup of juice at each meal by the time we go to his next swallow assessment in mid March.  If he is taking in enough fluid and calories by then we can figure out when the feeding tube can come out!

We are waiting for a prism lense to come in for James'  right eye.  He has gained back a lot of movement in that eye,  but still has some double vision close up,  due to the up and down movement of the eye still being difficult.

He is able to do his own transfers in and out of his chair now.  His balance is improving slowly,  and he is getting better on the walker. He still needs a spotter close by when he is on the walker though.

We now have a speech therapist working with James on vocalization! She is seeing him once or twice a month when she has a cancellation spot right now, Then in a month or two, she will see him once a week.  He did well with her last week.  He was sure tired afterwards !  They worked a lot on diaphram breathing and making a few different sounds.