Thursday 29 August 2013

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!  


 

Sunday 18 August 2013

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!   





Monday 12 August 2013

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!