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!