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.