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!

James is home from rehab now!   He has come such a long way.  There is still a lot of hard work ahead,  but at least he is home!  Discharge day was November 9th.  He was so excited to be coming home for good.  He kept hugging the nurses and therapists!  There was a welcome home ice cream get together at the church on Saturday and James seemed to enjoy himself.  Our friend Robin made James  a blanket and James insisted that it go on his bed as soon as we got home! 

This week we have reconnected with our family doctor (he said that he would not have recognized him),  had a visit from a Speech thereapist who deals with communication devices and we will meet with James'  occupational therapist later this week.  Physio and Speech therapy will start at the end of the month and then life will get really busy!  We also have an appointment with his new physiatrist (specialty doctor)  in Nanaimo that week too! 

We are waiting to hear about recommendations from the neurologist who saw James in the hospital before he left rehab.  He had some ideas on how to calm the tremor in James right arm. 

It is so good to all be home together again!  Life is still far from normal,  and may never be the same,  but at least we are all under one roof again!   James is a very stubborn fella and who knows how far he will get!

James and his speech therapist at rehab called me with some exciting news today!  James had another swallow assessment today and he passed with flying colours with the puree!  It will still be quite a while before he can replace a meal because he needs to build up his swallowing muscles.  But he is heading in the right direction!  He is going to start working with the speech therapist on monday next week with taking a little bit of puree by mouth everyday!  Then next Friday is discharge day!  He will be really home at the end of next week!  He also came home with a walker the last two weekends.  He is doing quite well with it and we will be able to borrow one from red cross.  He is still  needing a spotter when he walks,  as his balance and reflexes are still not great.  But I notice a difference each weekend! 

Last weekend Mark drove down island to pick up an adult trike bike that was offered to us from some friends of Gramma's for James.  We had an opportunity to take James to the local school parking lot to try it out today.  James loved it!  He didn't want to get off and rode it home!  After we got home he asked when we could go for a family bike ride!  He rode it for about half an hour and would have liked to continue!  I guess whenever we get a break in the weather on the weekends we will be taking him back to the school to practice!

 

We had a nice longweekend with James home this past weekend.  I picked up a connect four game and he had a great time winning against all of us!  James is working hard on all his therapies.  He has a lot of exercises to do each day for his speech and language therapy.  His swallow is still a bit slow and not timed well enough to take anything by mouth yet.  He also has a bit of a cough that wont go away.  We are hoping that the exercises will help and he is going to get another assessment done either the last week of October or the first week of november.  If his swallow still isnt better he may have to go to a specialist for a scope of his throat.  It is possible that there is some scarring that could be getting in the way.  Last week he had an EEG because the doctor thought that the tremors in his right arm could be seizure activity ( I didnt think it was, since it shakes all  day and then stops when he falls asleep)  He was on the EEG for an hour and a half and his arm shook the whole time,  but no seizure activily showed up.  So they are pretty sure it is a brain injury related tremor.  It may just go away with time,  but the doctor sent a video of the tremor to a specialist in Edmonton.  James new chair should be arriving in the next week!  Then he will have an ipad mounted on it at the end of October.  The ipad will have his communication program on it.  James is super excited about halloween and I am planning to bring him home on the 31st for a super long weekend that week.

It  has been 8 months today since James' accident.  He sure has come a long way!  When I get feeling down about the whole situation I try to look at where James was 8 months ago!  Who knows what he will be doing in another 8 months. 

I was amazed this week at how much smoother his walking is getting.  In physio he is walking using the rail in the hallway with the therapist doing very little supporting.  He has also been doing some work on the mat in the gym.  They have him going from laying down to up on hands and knees to kneeling and balancing on his knees.  It is a lot of hard work!  His goal for physio is to be able to walk with a walker 50 meters with minimum assistance by November!

The speech therapist is planning on a swallow assessment soon!  The goal is to have him taking enough by mouth by mid November that he will be able to replace one tube feed meal a day with a meal by mouth! 

He is working on becoming more independent with self care too.  He is working on dressing himself with minimum assistance and the rehab assistant was telling me that he is trying to tie his own shoes!

Last week the doctor took James off of his medication that helps with anxiety.  Good news was that he did not become any more anxious off of the medication.  However the tremors in his right arm have increased a lot.  The medication is known to mask tremors.  So they are putting him back on it,  and will  try cutting the dose down gradually again in a month or so.  As he becomes stronger it is likely that the tremors with ease.