Ponoka Journal

 

Sunday, Jan 6/08

Doug and I got up at 5:00 a.m. for the trip.  Doug started Devon's feed while he slept.  At 5:30 we went into his room and he was wide awake!  Then Jamie came over at 5:40 a.m. and she crawled into bed with him.  Needless to say he never went back to sleep.  We thought this would be good he was awake so early and would sleep in the van on the way.  Didn't happen!  Devon stayed awake the entire time!  We stopped in Saskatoon and freshened up and then traveled to Delmas.  We stopped at Auntie Vicky's house for a couple of hours and had a wonderful visit.  Vicky was SO happy to see him and Devon had some smiles for her.  We arrived in Edmonton at 6:30 p.m. and got a hotel room for the night.  Devon did not go to sleep until 10:30 p.m.! 

Monday, Jan 7/08

Happy Birthday Devon!  We got up in the morning and Devon opened his presents and then he got a phone call from Blayne to wish him happy birthday!  We arrived in Ponoka at 10:30.  The first day was extremely busy with meeting everyone, examinations, assessments, etc.  Devon was pretty tired but remained strong and still very excited to be here!  His unit is Ferintosh House.  Kris is here with him which is really cool.  They recognized each other right away and have been hanging out together every chance they get.  Devon has been nothing but smiles since we got here.  He will also be starting a new feed called Iso Source, (they have a different feeding system here) and we hope he will tolerate it well.

The people here are absolutely awesome!  Today Devon had physio therapy (and he really showed off!), speech therapy and occupational therapy.  Each day he has a schedule with all his therapy times.  His nurse is Justin and he is awesome.  Devon will get along with him just fine.  We gave Devon a bath and tucked him in.  His weight today is 123lbs.

Tuesday, Jan 8/08

The nurses got Devon up this morning and they reported all went well.  When we came in he looked up at us and smiled.  Another busy day today.  Again Devon did great in physio.  He spent some time with his speech therapist today.  She said first we have to work on getting his mouth open.  In order to do that we need to alleviate his tooth pain.  The doctor is ordering some gel that will numb Dev's mouth so we can get in there with the tooth brush.   Dr. Rosenkranz gave Devon his physical exam today.  He said everything was great and he could tell we looked after Devon very well.

There are parallel bars in the unit and we stood Devon on them in the evening.  Everyone was saying, "wow Devon, look at you!  Awesome!"  Again he had laughs and smiles.  He was in a great mood when we left for the night.  It is real weird having someone else put Devon to bed!  I guess we have to get used to it and learn to transfer the care to these wonderful people here.  We are having an easy time trusting them and leaving Devon in their care.

Wednesday, Jan 9/08

This morning Devon got a shower and some blood work done.  He had physio, a school assessment, recreational therapy tour and an appointment with the psychologist.  He was so tired, but again did awesome in physio.  We sat him in one of the big lounge chairs, reclined him back, and in minutes he was asleep.  He slept in that chair for 2 hours!

We taught Justin how we take Devon to the bathroom, and he did it with Devon with ease.  They are also constructing a toileting schedule for Devon.  We also showed the other nurses how we stand with Dev and how easy it is.  Nobody here wants to see him in a lift either!  It is going so good.

Thank you Jesus.

Thursday, Jan 10/08

Another awesome day!  Devon had physio today and decided to play with Wendy (his therapist).  She gave him a dinosaur to drop in a bucket, but he decided to play instead.  Each time she tired to get the dinosaur he would hide it behind his back!  Then the game began!  Devon had a good time.  He did do some work as well.  He got to try the arm pullies and did very well.  Then off to see Alanna (Speech Therapy).  We had a very good talk, of course all about how Devon used to be able to mouth words.  Then he had Gary (Occupational Therapy) and he put Devon on a bike and in a standing frame.  Then  Bev (Recreational Therapy) took us on a tour of the recreations at the Centre.

Devon looks so good!  You can tell he is happy.  He is adjusting beautifully.

Friday, Jan 11/08

This morning Devon had his admission video.  Of course Doug and I did most of the talking for him!  Dr. Rosenkranz has ordered some Zanacane for Dev's gums to numb his mouth before we brush his teeth, hoping for better "open mouth" results and trust to brush his teeth.  We are SO happy to have this kind of attention!  They addressed his mouth/teeth issue instantly, where at home he is still on the waiting list.  Impressed!!

Alanna said today that if she had not seen the video of Devon;s progress (March of 2005), she would not have believed that Devon could do the things we said he could once do.  Now she believes!  We love the attention she is giving to Devon's speech therapy.

Saturday, Jan 12/08

Today Jodi and Jerrod came to see Devon.  He had lots of smiles for Jodi!  Jodi was very excited to see Kris too!  The weekend staff are now just getting to know Devon.  One of the nurses told me that Devon was hugging her this morning and she just loved it! 

Dev had a great day today.  We spent most of the time walking around and checking out the Centre.  Devon is moving his arms very good today.  When dressing, he put out his arms for the shirt!  He has been in a great mood all day.  Today is Dad's last day with him.  Doug will go home tomorrow morning, and we will miss him (Probably not as much as he will miss Devon though!)  Hang in there honey!!

Sunday, Jan 13/08

Devon is in a very good mood today.  He had a great morning and we spent most of the afternoon cruising around checking the place out.  Later in the day Devon had a nap in one of the loungers again.  He sure loves that chair!  It is so great to see him this comfortable here!

Monday, Jan 14/08

Today Dr. Gray takes over for Dr. Rosenkranz (they rotate every 10 weeks).  Dr. Gray is considering discontinuing the Domperidone (stomach med) and also an EEG as Devon has not had one since 2004.  Devon did great in his therapies today.  The main focus for Speech Therapy is to get his mouth open.  Alanna has ordered a special toothbrushing system and the Zanacane on his gums should help.

Tuesday, Jan 15/08

I was stuck in Edmonton today as it was storming.  The nurses said that Devon had a great day and was in good mood.  Dr. Gray has changed Devon's Nexium to Prevacid and has begun to decrease the Domperidone.  He is also entertaining the idea of an MRI.

Wednesday, Jan 16/08

Awesome day for Dev today!  In school today John got him to pop balloons on the computer screen.  He had to help Dev a lot, but Devon really enjoyed it.  In Physio it was all about sitting unassisted and he did great!  We laid in his bed and watched a movie in the afternoon, and we fell asleep for an hour!  Devon is smiling lots today.

Thursday, Jan 17/08

What a wonderful surprise for Devon today.  Ashley and her boyfriend came to visit!!  Devon was so happy to see her.  They had a great visit and Ashley told Devon he is looking real good and to work real hard here, and Devon gave her a big smile.  For physio Devon went in the pool today.  He did pretty good although he wasn't used to "therapy" in the pool (not that he knows anyway).  I explained to Wendy that we disguise the therapy and are having fun when we're in the pool, and that way we get way more out of Devon.  Wendy said they will take him in the pool more often.  In OT Devon stood in a standing frame.  He did awesome!!  He has been laughing with the staff all day.

Friday, Jan 18/08

Devon's MRI is scheduled for Thursday, Jan 24.  He is doing real well without the Domperidone so it will be discontinued.  Yes!  One more med down!  Devon is having a good day.  He is very tired, but being he worked so hard all week, it is understandable.  His toileting schedule is going real well, he has only been wet once.  Awesome!!  Thank you everyone!!

Saturday, Jan 19/08

A great morning for Devon!  He is in a great mood today.  We spent most of the day cruising around and just goofing around in his room.  We turned the music up and redecorated his room.  I would hold the picture up to the wall and when I got it where he wanted it he would smile.  It was great.  Later on in the afternoon Devon had a sleep in the lounge chair.  When he woke up he had a big surprise – Jamie!  He was so happy to see her!  We showed her all around and spent the evening just sitting around talking.  Devon was so very content.

Sunday, Jan 20/08

As of today – no more Domperidone!!  The only med that Devon is on now is Prevacid for his reflux.  He is doing so good without the meds.  Devon had two more visitors today, Sean Chabun and his son Cole.  Again, Devon was so very happy.  Lots of visiting today.  Jamie spent a couple of hours hanging out with Dev in his room and then she had to leave for home.

Monday, Jan 21/08

Another very busy day for Devon.  He had OT, Speech, Physio and Recreational today.  He did very well with each but was tiring by the end of the day.  We were relaxing in the loungers when a nurse came over and said “Devon, you have mail”.  Dev looked up right away wide-eyed.  We opened his mail and it was a card from Grandma and Grandpa (with money in it).  Devon listened attentively as I read his card.  He was proud!

Tuesday, Jan 22/08

Weight today is 124lbs.  He is gaining!  Another full schedule of therapies today.  Wendy (PT) is concentrating on Devon’s legs this week.  She wants to train him to use his feet to move around in his chair.  Devon was very tired today so we laid down after therapies and watched a movie in his room.  Devon was in a super good mood in the evening!  He was laughing so much!

Thursday, Jan 24/08

Devon had school this morning and then we headed off for Red Deer for his MRI.  We had a wonderful drive out there (and shared some laughs too).  I think Devon really enjoyed getting out of the Centre and going for a drive.  He did real well at the hospital, but when it came time to actually go into the MRI it was a different story.  The technician and I spent about 20 minutes trying to convince Devon that it was just a test and he was perfectly safe.  But once the appliance went over his face and the machine starting making noise – that was it!  He was done!  So needless to say the MRI just didn’t happen.  At least we tried.

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We are very pleased with how Devon has adapted here at Ponoka.  He has been through many changes already and is handling them all so well.  We are amazed at how well.  The staff are absolutely awesome!!  And we know how important that is – to Devon and to us. 

We are fortunate to have Dr.’s Gray and Rosenkranz, talented therapists, devoted nurses and health aids.

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Dad was ecstatic to see Devon again, February 4th, and it was mutual!  SO much smiling and laughing!

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We took Devon to our hotel one day, hoping for a swim in the pool.  The pool was a little cold so we just sat on the edge of the hot tub and Devon hung his legs over.  Then we went back to the room and sat Devon on the edge of the bed.  We told him, it’s a king size bed buddy – do what you want to!  He stretched out in the middle of the bed and was asleep in minutes!  He slept for 2 hours!

Monday, Feb 11/08

We had our family conference today.  I kept looking over at Devon and he seemed to be looking at Dad and giggling.   Of course Dad was acting up again, and Dev could not help but to laugh.  We did a round table discussion of how each discipline was approaching Devon’s rehabilitation.  All the disciplines had good things to say about their interactions, and pointed out where improvement was required, including their thoughts as to how to accomplish these improvements.  Overall we feel the conference was a success.  Doug & Devon had been fooling around throughout the entire meeting and by the end, Dr. Gray decided to join in on the fun.  Let’s suffice to say that Dr. Gray wins the laughter of the day award by making Devon laugh so hard, we thought he was going to come out of his chair! 

Tuesday, Feb 12/08

We have to go home today (heavy sigh).

Now that we are home we just receive reports on how Devon is doing.  Each report has been good.  He had an EEG and it went well.  His weight had gone up again so they were able to decrease his feed.  Then his weight went down again, so they increased it again.  He has been maintaining his weight now.  He is sleeping good and the toileting schedule is going well.  He has seen the dentist for assessment and also for a scraping, although the teeth brushing is still difficult.  Ashley has been back to see him a couple of times (Thank you Ashley!!).  They have a lot of fun.  The last time she was there the nurse told us Devon cried when she left!  Oh buddy!  Although it is great that he had such an emotion. 

We received a call on Feb 17th.  The nurse was asking about a Segafix.  Why?  Well….the night nurse was making her rounds at 2:30 a.m. and when she went into Devon’s room there he was standing up on his bed holding up the wall! Not out of bed, ON HIS BED!  Praise the Lord – but how dangerous!  So of course they needed to change things to make Devon safe.  The first thought was the Segafix, but thankfully they decided to put his mattress on the floor instead.

April 5/08 

Devon is home!!  He did not get any extension on his stay.  Dr. Gray told us that he has no doubt that Devon is going to progress more and more, it just will not be there.  Devon was very, very homesick, therefore he did not want to participate too much (even a little depressed).  So they didn't get too far with the therapies.  It's all good though!  The improvements in Devon are wonderful!  No more meds!!!!!!  A much better wheelchair (not so disabling).  It is a normal wheelchair and he is learning to use his feet to mobilize.  He is so much stronger, his balance has improved greatly and he is so very happy now!  Nothing but smiles since we got back.  It was a wonderful experience and we are so very grateful we had the opportunity to go to Ponoka, and it was definitely worth all of this.  We are so happy he is home, we are complete once again!

Thank you to everyone at Ponoka!  You are angels.