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. 

James had a great Christmas.  We went over to the mainland and had a big family dinner with the Avery clan.  James seemed to enjoy himself,  and handled the Avery chaos well.  It was noisy and crowded but  we were there for over 3 hours before he asked to leave.  Dinner was yummy and I brought our magic bullet so I was able to purée some dinner for him.  The ferry ride was an adventure.  On the way over we didn't think about needing to be parked by the elevator and having enough room to get the chair out.  We had to get him out of his chair and fold it and walk him in areas to get him through on the ferry ride over.  By the time we got him to the elevator,  they had locked it due to bad weather.  The crew were great and came and escorted us up on the elevator.  We learned from the ride over and on the way back we asked for handicapped parking on the ferry.

James is eating a lot more purée.  We have had to drop him from 5 cans of tube feed a day down to 3 cans.  He is staring to drink slightly thickened fluids too.  He is booked for a barium swallow x ray on  January 17th.  If that goes well I imagine the next step will be planning how to get to a point where he no longer needs the tube feed.

January is a busy month for appointments.  He is going to see a dental specialist in Victoria on the 4th.  On the 11th he goes back to Victoria to see the eye specialist. The 17th is the swallow test in Campbell River and on the 21st he sees the physiatrist (basically a doctor of physio medicine) in Nanaimo.  Also he will likely have another appointment in Campbell River to have a splint made for his right hand to help stretch some tight muscles and tendons.

He is seeing his physiotherapist 3 days a week,  and we are talking about having a rehab assistant who will come to the house to do exercises with him,  so that some of that is taken off of me.  He is doing well on his new walker.  We picked up floor to ceiling poles at ikea while we were on the mainland.  He is practicing balancing between them.

James has been definitely thriving since he came home.  He is loving harassing his brother and sister  and I am actually enjoying seeing him bug them!  It is amazing how the things that used to bug me I now see as huge blessing!  Who knew that I would be thankful that my kids are capable of scrapping with each other!

James has been home for just over a month now  and , wow,  he has been working hard!  His Physiotherapist is awesome!  He loves Physio,  and his balance is definetely improving. His physio therapist makes it really fun,  but works him very hard!  Its cool because he explains to James what muscles he is working or stretching,  so it becomes a bit of an anatomy lesson too!   He can also get down to the floor and back up using the couch to lean on with very little help.  He got a new walker last week and he walked into church today!  We left his chair at home!  He is also starting to eat enough puree to drop a can and half of tube feed a day!  He has an appointment with the Speech therapist again next week,  and I think she is going to be surprised!  When we saw her last, she okayed us to give him about 1/4 cup of puree twice a day,  and I was feeding him.  Now he is feeding himself and he is eating about 1/2 a cup three times a day.  He is wanting more though,  and is asking for something more solid than puree!  I am hoping to find a speech therapist to work on vocalizing with him.  He has mouthed at people a couple of times lately.  It has seemed automatic and while he hasn't actually said anything it is the beginning of automatic movement!  He can say "Hi" and "Hey"  though, if prompted.  It is a bit nasal and slow,  but with practice I am sure it will get better and can be added to!