Jan 1 – sat up in completely still in his bed today for about an hour. Quite settled. When we ask him to cough he does. He is only being suctioned twice a day now.
Jan 2 – pulled at his trache today. (actually pulled it out a bit) Respiratory came up and fixed it up.
Jan 3 – Grandma Joan and Auntie Roberta came to visit today. Devon got his new PEJ today. Everything went well. Slept all day.
Jan 4 – First day of PT (physio therapy). He did great. They even stood him up!! It took a lot out of him so he rested most of the day.
Jan 5 – Dr. Baird came to see if they could give Devon a better trache. When she went to change it, she decided to ask Devon, "take a big breath through your mouth" and he did! Then she asked him, "take a big breath through your nose" and he did!! The trache is out!! Devon is breathing completely on his own!!!!!! What a great day! Day 55 and the first time we could hug Devon. It felt soooooooo good.
Jan 6 – another good day. What a difference with the trache out. Cant seem to stop hugging him. Today he lifted his arm to hug me back. He has been answering to commands all day.
Jan 7 – today is Devon’s birthday. He is 16 today. I bought a bunch of balloons and decorations for his room. Unfortunately he is not well today and has been vomiting all morning. Dr. Nell came to see him and said they must extend the PEJ once again. Another intravenous is started. He went for a chest xray and it revealed pneumonia again. More antibiotics. Very restless today as he is not feeling good at all. All his friends came up today to say happy birthday. Grams, Grandma Joan, Auntie Roberta, Kyle and Kelsey came up too but unfortunately Devon was too sick and nobody got to spend any time with him.
Jan 8 – they are keeping Devon sedated all day with morphine. It is nice to see him so restful. His weight is dangerously low. He weighed in today at 88.9lbs
Jan 9 – doing much better today. We opened up his presents today. He looked at all of them very intently. He tried to say something today. He tried 3 times. It started with an "sh" or a "ch" we aren’t sure. But it was exactly the same each time. He was forming his mouth and everything. Jodi was standing with us so I think he may have been trying to say Jodi!
Jan 10 – Had his PEJ extended today. Everything went well. Again he rested all day.
Jan 11 – No morphine at all today! Devon was back to PT today. He did good again and even reached for a ball. It is so much better now without the trache! We got to walk around the unit today and Devon watched the tv for 5 minutes. He winked when asked, and we asked him to lift his right leg and he did, asked him to lift his left arm and he did. We even asked him to reach for the lift (the triangle hanging over him on his bed) and he did!! He worked very hard and you could tell he was really concentrating. Eventually he reached it and hung on to it!! We got to take him for a walk around the unit today. Another great day!
Dr. Fink has been in and said he is very impressed with Devon’s progress. He said that he was very surprised Devon had progressed so well and also told us that it is unusual to see this kind of progress after such an incident. Praise the Lord. So hopefully in a couple of months we will be at Wascana.
Jan 12 – Devon is showing more emotions. He is so happy when he sees us. He gets excited now (and also get angry!)
Jan 13 – Devon vomited this morning so there was no PT today. Again they have turned off the feeds. Today he can touch his chin when we ask him to. He likes to look at pictures now. He loves his basketball calendar and looks at that for hours! Today we walked around the unit for 3 hours. Devon really likes it.
Jan 14 – no vomiting today. Feeds are turned back on. He has been very sleepy all day and not very responsive. Dr. Hawke has decreased the Respiradone, thinking this may be what is sedating him so much.
Jan 15 – that was the problem! Much more awake and responsive today. Doug and I are now crawling right into bed with him and sitting him up. He crosses his legs when asked. Now that he can lift his hand up to his face he is trying to take the oxygen out of his nose! Feeds started again and are running at 70ml an hour. He was tapping his foot to music today.
Jan 16 – Devon doesn’t seem to be feeling too good today. When I asked him if he was in pain he shook his head yes. I asked the nurse for some pain killer and just before she got in with it he was stretching his legs and got his catheter caught in-between his toes and pulled it right out! The poor guy. He was in so much pain. They got him fixed up and gave him Morphine for the pain.
Jan 17 – doing great today. He is very alert and doing so much! They stood him up in physio today and his feet just started going! He is very anxious now and doesn’t realize that he can’t just get up and walk! Dr. Nell came by to say that he wants to redo Devon’s PEJ maybe tomorrow. We walked around the unit again for some hours. Dev reaches out for the rails when we go for walks and likes to slide his hand along them as we go.
Jan 18 – He started pointing today!!! When Adrianna was leaving she said "bye" and Devon mouthed "bye". He now answers yes and no all the time by shaking his head. Had another chest xray today.
Jan 19 – Had his PEJ redone today and he did real well coming out of the sedation. Devon put his own hat on today! It took a long time and he put it on sideways. I corrected it and he immediately turned it sideways again! Auntie Roberta, Kristal & Kassidy and Kari & Teegan came to visit. Another good day for Devon.
Jan 20 – Can sleep on his side now. He is very content today and can point to the right colors when asked.
Jan 21 – Devon has started to wave to everyone. When we are walking around he waves at all the patients he can see in their rooms. He is moving both arms at the same time now and is asking for hugs.
Jan 22 – I tried to cut Dev’s fingernails today and he kept pulling his hands away. I said, "it won’t hurt Devon, watch mom, I will cut mine" and he watched me cut mine and then let me cut his (even his toe nails). He remembers his "special handshake" with his dad and can do it. He understands so well.
Jan 23 – Devon had a tub bath today. He seemed very scared at first. Then the nurse figured out that the jets were scaring him and turned them off. He was still a bit upset with it all but did pretty good. When we went walking around today he kept pointing at the exit signs. He wants out! Grandma & Grandpa, Auntie Roberta, Kyle and Kelsey came up. A very nice day of visitors.
Jan 24 – Devon is going to the toilet now! He really hates the diaper idea since pulling out his catheter and when the nurse asked him if he had to go pee he said yes, and sure enough! He can hold up the number of fingers you ask him to. Auntie Roberta brought her friend tonight to cut Devon’s hair. He was a little scared, but did good.
Jan 25 – Devon is practicing chewing and swallowing. He swallows all the time now. We haven’t had to use the suction once today. He is starting to notice when he drools and he sucks it in and swallows. Doug said to him "I love you" and he mouthed "I love you" back.
Jan 26 – an excellent day in PT today. Devon can go on his hands and knees and hold it for about 15 seconds. When they are walking him he is taking the steps by himself. He needs lots of work on his upper body and his balance. He can catch the ball when they throw it to him. Feeds are up to 100ml an hour now!
Jan 27 – Devon was vomiting again last night. They are going to try and schedule his feeds differently and see if this helps. It may be that laying down after a feeding causes the vomiting.
Jan 28 – Devon can sit by himself for about 20 seconds. He identified all the colors of the blocks put in front of him and tried to pick them up. His bandage came off his neck today and it looks real good.
Jan 29 – When Jodi and Garrett were leaving and saying goodbye Devon gave the "peace" sign. He also recognized the friends who came to visit today and mouthed their names. Devon laughed today for the first time.
Jan 30 – We heard voice today! Devon said "ya" twice. Meds are now cut in half.
Jan 31 – Excellent day in PT. The therapists are saying he is improving very fast.
Feb 2 – Devon was trying very hard to tell the nurse something. He couldn’t get it out too good and she couldn’t understand. As she started to walk away, Devon said "shit". He had to go to the toilet! They are still laughing about it. But that is what he needed to do! He went in the toilet too!
Feb 3 – Devon got his hair cut today. He was a little scared but it went well. He looks like himself again! He spelt his name today with the alphabet board and he also spelt "battery". He needed batteries in his Simon game. Once we got it going he did a sequence of 5! Devon had his swallowing test today and unfortunately he failed it. His throat muscles are too weak.
Feb 4 – A sleepy day today. We played with the ball and when I threw it to Devon he caught it.
Feb 5 – I told Devon today that Jamie had her baby and he gave me a big smile. About ten minutes later we were just sitting there and he started mouthing. I said "what are you saying buddy" and he mouthed "what did they name him?". Awesome!!!!
Feb 6 – put his arms out to hold the baby. He gave baby many kissess. I laid down with him and he had a sleep. I didn’t use the jacket that they tie him in with. I think it makes him very angry. But it is better than tying his hands down! He had a great sleep.
Feb 7 – Transferred to Wascana Rehabilitation Centre today! He did real well with the transfer and seems quite settled.
Feb 8 – Jodi found out today that Devon gets embarrassed. When she asked him in front of some of his friends if he had to go to the bathroom, he gave her the finger!
Feb 9 – A busy day today. Devon had OT (Occupational Therapy) in the morning and then ST (Speech Therapy) at 1:00 and PT (Physio Therapy at 2:00). He stood straight up for the first time today. He is doing wonderful with all his therapies.
Feb 10 – Doug put Devon in front of the mirror and let him shave himself with the electric razor. He did very well. He is a little upset when he looks in the mirror and sees the scare on his throat. He tries to pull his shirt over it. In ST he made a sound! I couldn’t help it and cried out.
Feb 11 –Unfortunately Devon pulled his feeding tube out this morning! They have put in a temporary one until he can get to RGH and have it redone. Again! We also gave the toothbrush to Devon and he brushed his teeth.
Feb 13 – ST gave Devon an Alphabet Board to spell with. We brought Devon some dumbbells and he really likes them. He has been lifting them all day. Also played with Leap Frog today.
Feb 14 – When asked to spell the names of the people in his family with the alphabet board Devon did it with ease! Grams brought Devon a huge valentine card today! Grandma and Grandpa also came up with valentines for Devon and Auntie Roberta and Kelsey came to visit too.
Feb 16 – We couldn’t find Devon’s bunny for a while. He heard us talking about it. About 5 minutes later he started to spell on his spelling board. He spelt "did you find it?"
Feb 17 – Heard a little more voice today. Devon’s speech therapist asked him "what did you watch on tv today?" Devon spelt "dad and I watched cartoons". In PT he is sitting better and better! When he stands now he can be very straight for a few seconds.
Feb 18 – Devon had fun with his physio therapist today. While playing ball Devon kept teasing him that he was going to give him the ball and wouldn’t. Devon was smiling.
Feb 20 – up to 200ml an hour for feeds! At 9:00 tonight Devon spelt "I want to sleep".
Feb 21 – Devon was quite restless and his legs were going wild. When I asked him to try to hold his legs still he said "I can’t". I had to leave for a while today as it is Grams birthday and I told Devon I had to go and I would be right back. He spelt "fast".
Feb 22 – Devon pulled out his feeding tube again last night! He has also been vomiting today. He was very restless in his chair and when I asked him to spell what was the matter, he spelt "I can’t".
Feb 23 – Devon pointed to the tv. When I asked him if he wanted to watch it he said "yes". I said "what do you want to watch" and he mouthed "cartoons".
Feb 24 – scratched his head today! He figured out that he can lift his arm high enough. He also said "ya" twice today with his voice. He weighed in today at 91.6lbs.
Feb 25 – Loves to play volleyball with the balloon. He is starting to lift his arms higher.
Feb 26 – There was a symphony playing in the concourse and Devon really seemed to enjoy the music. After each song he clapped his hands. He made some noises today with his voice and I said to him "Devon that is your voice. Lets hear your voice again" and he said out loud "voice". While the nurse was giving him his flush (water through PEJ) Devon said "it hurts". Oh boy, I hope it’s not out of place again!
Feb 28 – Devon’s responses are getting quicker. In PT he took 30 steps with the walker!
Mar 1 – When I came in this morning I asked him how his day was going and he mouthed "good". First time he ever said good when asked that question.
Mar 2 – We went to Pasqua Hospital to get Devon’s PEJ fixed. He had to go by ambulance which is very stressful for him. All of his bed sores that were beginning to heal broke open as he freaked out in the stretcher the whole time. He was not at all happy.
Mar 3 – in OT today Devon got to play on the computer. The therapists were shocked at how good he can do!
Mar 4 – Dr. Sharman came in to Devon’s room today to tell us how impressed he is with Dev’s progress.
Mar 5 – Today Devon learned how to use his feet to make his chair move. He can go backwards real well and we are working on going forward.
Mar 6 – Devon is not feeling very good today. He has been vomiting and has diarrhea. He also indicated to us that his tummy hurt. It turns out that Devon has a bacterial infection in his intestines called C-Diff.
Mar 7 – Devon is now in isolation. Late in the day Devon was having problems breathing. His SATs dropped very low and he was rushed to RGH. The doctor told us he thought the feeds were running too fast and it was coming back up into his lungs and blocking his airway.
Mar 8 – Dr. Fink is going to start decreasing Devon’s Clanazopan and get him off the drug completely.
Mar 10 – when I came in his room this morning he gave me a big smile!
Mar 11 – Once again Devon pulled out his button for his new PEG! So the temporary one is in again and we will have to go back to RGH. Devon figured out how to stand on my feet today! We danced around like that and he just loved it. Darlene and Elaine came at lunch time to visit.
Mar 13 – Devon had lots of visitors today. Darlene, Dustin, Jill and Claudette, and later in the evening Karen Gordon and Shawn came to visit. Devon can hold a cloth and wipe his mouth now.
Mar 14 – gave Devon a paint brush and we painted some pictures. At this point he can only do lines.
Mar 16 – Devon is getting pretty sick of being stuck in his room! We are able to take off the masks today. (Devon hates us wearing them and is always trying to pull them off). Darlene and Elaine came at lunch today.
Mar 17 – Jennifer has been working Devon on competency. She uses workbooks (math, same & different, etc) and Devon is barreling right through them! Math, opposites, etc.
Mar 18 – Devon was holding his head with his eyes closed and Dad asked him what was wrong. "Do you have a headache, are you dizzy, what is wrong Devon" and Devon opened his eyes and looked at Dad and said in a loud whisper "I am not crazy". Doug told him, "of course you’re not Devon, we know that".
Mar 19 – When I asked Dev how his day was today he said "bad". The nurse checked his SATs and they were low. Dad told him to take some deep breaths and it came back up. He has also discovered sucking his fingers!
Mar 20 – Devon had trouble breathing today and his oxygen level went way down. Once again he was rushed to the RGH. He was given a higher dose of ventalin, observed for four hours, and then we returned to WRC.
Mar 21 – Feeling much better today. Devon can hold the shaver and shave himself in front of the mirror. He also started mimicking me today!
Mar 22 – Devon said "Mom" today with his voice! He also had some presents for me and with Darlene’s help he made a beautiful card and got me a basket of my favorite things! While dancing with mom Devon started singing the words to the song! (no voice). It was Nelly and Tim McGraw’s Over and Over Again.
Mar 23 – Today we went back to RGH to have Devon’s feeding tube reinserted. Everything went real well. We still had to use the gowns, gloves and mask due to his isolation. When we got back to WRC the nurse came in and said, "You’re off isolation Devon"! Ya!
Mar 24 – Used a walker in physio and did really good. Jamie, Ryan and Austen came to watch. Jamie gave Devon her sunglasses to wear and he thought that was pretty cool. As we walked around with his shades on he kept both thumbs up! Pretty cool!
Mar 25 – Jennifer, Caiden and Jay Buckoski came up to visit. Jennifer said, "do you remember Jay?" and Devon whispered "Jay"
Mar 26 – We turned on Devon’s tv and I asked him what the movie was that was on and he said "The Secret of Nimph". That was exactly right! He got all his flash cards right (what doesn’t belong). We took him outside for about 10 minutes. Not sure if he liked it or not.
Mar 27 – Devon’s weighed in today at 93.8lbs.
Mar 28 – Another stressful day for Devon. Again his oxygen level dropped very low and he was rushed to RGH. The put in 2 IV’s, did a chest xray and some blood work. His oxygen level went back up. When we got back to WRC he slept for an hour.
Mar 29 – A much better day for Devon. Jamie, Ryan and Austen came for a visit. He kissed Jamie and then I said, "look who else is here". Devon turned to look and mouthed "Austen" and then "Ryan". Dr. Fink ordered a mask today for Devon. He will have it four times a day and that should help with the dropping oxygen. Jennifer and her friend Jessica came to visit. Devon wouldn’t let go of Jessica!
Mar 30 – Devon’s oxygen dropped again. We did some deep suctioning and I asked the nurse to take his temperature. It was high. Dr. Sharman ordered some antibiotics for him and will send him for another chest xray.
Mar 31 – Devon’s SATs are still up and down so he is getting oxygen as needed. Dr. Fink came to talk to us and he is going to order 5ml ventalin to use on Devon when his SATs drop. He also gave us clearance to go to RGH in Devon’s chair so he doesn’t have the stress of the ambulance. They did the chest xray this morning that showed the feeding tube has come out of his bowel! Damn! Elaine, Megan, Darlene, Dustin and Mackenzie came to visit.
April 1 – Devon did wonderful in PT today. We walked with Erin (his therapist) from one end of the room to the other. Everyone in the room was congratulating Devon! Dad took him outside in the evening and Devon really enjoyed it.
April 2 – We took Devon outside for a walk and he loved it! We took him out again in the evening and when we asked him if he wanted to go in now, he said no! I asked Devon if he knew his phone number. He used his fingers to show me – and he knew it!!
April 4 – Devon’s stitches on his PEJ don’t look very good today. We have called the doctor to look at them.
April 6 – Today Devon went to the RGH to have Dr. Lala look at his stitches. Dr. Lala noticed his tube has come out yet again. So we will be back. Darlene and Elaine came up to visit today but only got to see him for a few minutes as he had to go to RGH.
April 7 – Devon was having some troubles today with hiccups and burping. The hiccups were very violent and he couldn’t seem to stop burping. It is obvious that the feeding tube is not positioned right.
Jamie & Austen came to visit. Devon slept the entire time. Later in the evening Jennifer and Jessica came and they video taped some of his learning.
April 8 – Went to RGH and had his PEJ redone. It is different than the other ones, it’s just a little button in his stomach, but Dr. Lala said it is the best one. So far Devon is tolerating it well.
April 10 – Devon weighed in at 95.8lbs today!
April 12 – Jennifer came up tonight and did counting with Devon. He can count to 50!
April 13 – In OT today Devon played cards with the therapist. Jamie and Austen came to watch and Jamie was very excited to see how good he is doing!
April 15 – Jessica came today and gave Devon a hair cut. Jamie, Austen, Auntie Wendy and Grams came to watch Devon at PT. He did great! In the evening Ashley had arrived in Regina from Edmonton and she called the unit. When Doug told Devon that his friend Ashley had called, but he couldn’t remember her last name, Devon whispered "Randall"!
April 16 – Jodi came to visit today. She said she is very happy to see all the progress Devon has made. He showed her how good he can take steps.
April 19 – Jennifer was spending the evening with Devon and Devon indicated that he had to go pee. While Jen was getting him up to put him on the toilet he peed on her!
April 20 – Devon said "happy birthday" to Jamie today. She almost started to cry!. His SATs went down again so we did some suctioning and gave him oxygen. It didn’t take long and his levels went back up. Melissa, Heather and a gang of girls came up to visit. They were all very excited to see how good Dev is doing.
April 21 – While suctioning Devon today he grabbed at it and started to suction himself! For the first time today in PT he stretched out his right arm fully! (the doctors had said he would never have use of his right arm). Jennifer took him outside to the playground where they found some monkey bars. Jen put his chair under the monkey bars and Devon reached up (with both hands) grabbed the bars and began to pull himself from bar to bar!
April 24 – Darlene and Dustin came today. Darlene and I decided to leave the guys alone to visit and we went for a coffee. When we came back Devon’s door was closed and we could hear hooting and hollering. One of the nurses said "something is going on in there!" We opened the door to find Devon and Dustin playing soccer with a couple of balls. Devon was having a great time!
April 26 – Devon’s voice came out a couple of times today. He would notice, then try again but nothing would come out. It seems when he isn’t concentrating on it, it comes out.
April 27 – Feeds are up to 220ml! He is tolerating it very well. Devon and I danced and he loved it! Jennifer started teaching Devon sign language today. They did the whole alphabet twice! Then she taught him how to spell his name and he did it himself! He peed on her again today. Then something clued in to Jen. She asked Devon "why did you pee on me again?" and Devon whispered "stand up". He just wanted to stand up and pee normally!
April 28 – For the first time in 168 days Devon got to taste flavors. His speech therapist gave him strawberry syrup on his lips to taste. He tried very hard to swallow and he just loved it! He walked the bars again in PT and Jamie video taped it. Devon and Jen practiced their sign language tonight.
April 29 – Darlene and Elaine came today at lunch. Elaine asked Devon if he missed her and he nodded yes and gave her a hug. Elaine told him that she was sick and he make a sad face. And when she said "I missed you Devon", he smiled.
April 30 – Jodi and Garrett came to visit and Devon was showing off for them. He gave Garrett the "peace sign" when they were leaving. He weighed in today at 98lbs!
May 3 – We met with Dr. Fink today and he explained the LTC (Long Term Care) plan for Devon. We have to go and see the unit and meet the staff. Dr. Fink said he knows Devon is in there and he does see the progress, he just believes Devon’s recovery will be long term.
May 4 – Darlene and Elaine came today and Devon told Elaine he loved her! Devon has really enjoyed watching Much Music today, glued to the tv. At PT today Devon looked mad, and Jamie asked him, "are you mad" and Devon nodded yes. Jamie asked, "why are you mad?" and Devon whispered, "I don’t know".
May 5 – I noticed that Devon’s eyes look different today. He seems almost sedated. They had started a new medication for him (for mood). I hope this is not what it will do to him. In PT today he climbed up 5 stairs, twice! Coming down was quite a bit harder for him, but he did great. His SATs dropped to 92 and his fingernails were blue. We gave him oxygen for about an hour and they came back up.
May 6 – Still seems sedated. If he remains this way we are going to tell Dr. Fink to discontinue the med.
May 8 – Far too sedated!! We told the nurse no more of that medication! (Valporic Acid). He does not have a mood problem.
May 9 – The Valporic Acid has been decreased
May 10 – We went on a tour of Devon’s new unit, 3-3 and met the new social worker.
May 11 – While Jamie was walking Devon around she said, "how do we get to the concourse?" and Devon pointed the way down each hallway and corner!
May 12 – Ashley, Christina and Chane came to visit. Devon told Ashley that he loves her! Devon is doing great in PT. He is using a walker now and can go a few steps.
May 16 – Devon is still too sedated. We have asked for another decrease. Devon is not responding anymore. His nurse said she had noticed also and questioned the need for the med. We danced a lot again today, Devon really likes it.
May 18 – On blood tests today Devon’s potassium is high, which in turn speeds up his pulse. They will do another blood test tomorrow. We are still voicing our dislike of the Valporic Acid and the nurses said they will tell Dr. Fink how strongly we feel about this.
May 19 – Dr. Fink has stopped the Valporic Acid! Devon gave me the biggest hug ever today, and then he pushed me aside and was reaching for his dad!
May 20 – Today is Dustin’s birthday and he came to spend time with Devon. Dustin said "this is my birthday present". Devon told me today he wasn’t feeling very good. About 15 minutes later he vomited. He napped for a while and when he woke up he was feeling better and we went for a walk through the park. We can already see improvement in Devon’s eyes today. What a difference without Valporic Acid.
May 21 – Jill and Heather came today and spent a couple of hours with Devon.
May 23 – For the first time Devon’s oxygen was 100%!!
May 24 – Devon showed Darlene and Elaine how he can brush his teeth. It was a bit difficult as he didn’t want to let go of Darlene’s hand! Jamie spent most of the day with him and when they were watching tv he looked at Jamie and mouthed "I have to pee". She had made a picture for him and when she showed it to him she asked him what it said. Devon mouthed "Devinchee" and that is exactly what it said!
May 27 – Grams came today to watch Devon at PT and Derek also came to visit with Devon. As we were dancing tonight Devon was singing to the words (mouthing, no sound) and he knew all the words!
May 28 – Today Darlene, Dustin and Mackenzie came up with Darlene’s sister and her boyfriend Jason. Jason had also suffered a brain injury and had spent one year at Wascana. It was so nice to meet him and to see how good he is doing. He told Devon to "hang on" and he is "going to make it".
May 30 – Jill and Claudette came today and said they are amazed at his progress. When Darlene and Elaine came up Devon was trying very hard to say something to them but he just couldn’t get it out.
May 31 – Jamie was showing Devon his birthday card that Melissa and the gang made for him with pictures of all of them and Devon stared at it for 15 minutes. Then he was pointing and saying some of their names. Ryan had given Devon a Super Nintendo. Jamie hooked it up and decided to try Devon on it. She was not expecting much and Devon played three levels!! It takes him a while and he tries so hard. Jamie cried.
June 1 – Two months now without breathing problems! Go Dev!
June 2 – Heather and Melissa came today. Heather said she was thinking about Devon all day and had so many memories in her head all day that she had to come see him. Melissa said that every time she comes she now hears good news.
June 3 – Today Auntie Vicky, Carrie and Shelby came! Auntie Vicky was so impressed when she watched Devon in PT and she took lots of pictures. Shelby bought Devon a "Sponge Bob" in the gift shop and Devon loves it. He carried it all day. Later on Jamie, Ryan and Austen came and they brought Paco (their dog). We didn’t get the response we were hoping for with Devon seeing Paco, but I think it was all a bit much for him at once; look at Paco, say hi to Austen, look at Ryan, kissing Jamie…. We know that if there is too much going on it becomes a blur to Dev. He was taken of his nebulizer today! He will only get it if he needs it. It was truly a great day.
June 5 – We took Devon to the "Teddy Bear Bash" which was right behind Wascana. We really enjoyed looking at everything, especially the fire truck and the bull dozer. When we left there we went to the back of Wascana and took Devon out of his chair and sat him on the grass cross-leg. He sat all by himself! It was just awesome!
June 7 – Jamie tried to get Devon to blow some bubbles. He has the right idea he just can’t blow hard enough. So Jamie was blowing them and Devon tried popping them! Devon showed Jamie that he can take his shirt off himself.
June 8 – we met with the unit manager of unit 3-3 today, along with the Head Nurse and the new social worker Cynthia. Devon will be going over there on Monday. He will have a room across from the desk as we requested.
June 10 – we bought Devon a keyboard today and he really likes it. It is hard, but he tries and tries and he can play some of the keys. He really likes the funny sounds he can make with it.
June 12 – we sat in the park today and just watched the people and the geese and so on. Devon sat and just looked around so contently for 45 minutes. Jill came up to visit in the evening. While dancing with Dad Devon was mouthing out words again (they were listening to Eminen-Encore).
June 13 – Devon’s transfer to LTC today went quite well. We bathed him in his new bath tub room and made him as comfortable as possible. It is looking around checking it all out. I hope his first night goes well.
June 14 – Jeanette (the head nurse) said Devon’s night was great (although he didn’t settle until 2:00 am.) and this morning when they did his grooming there was no problem at all. She said he is very cooperative.
June 15 – we met Devon’s new PT therapist Marg today. Erin came to show Marg what to do with Devon and what Devon can do. Doug sat Devon in a normal chair today and he sat so good!
June 16 – Jennifer and Amber took Devon to the park today and they did some painitng. Devon started to paint on them so they painted him back! Devon had lots of fun. Tonight Dustin was performing with Sask Express in the cafeteria. Devon did real good and the loudness didn’t seem to bother him this time. He even got his picture taken with the group!
June 18 – Smiled when he saw us coming down the hallway.
June 24 – Devon was pointing to the bathroom letting me know he had to go.
June 25 – There was a thunder and lighting storm today so I took Dev outside under the canopy. He just loved it! We sat there for about 40 minutes.
June 26 – Ashley and the gang were here today. Devon had smiles for everyone!
June 27 – Devon has been approved for a pass!!! We can finally take him out of here for a while!
June 29 – Sydnee and Dayna Desautels came to visit Devon today. They both said they are amazed at how good he looks. Devon played with his keyboard on his own today.
July 1 – Jill came up today and brought Devon a beautiful hand crafted box she had made at school to keep some of his things in. Devon really liked it and looked at it for a long time. Jill put an inscription under the lid and we read it to Devon and he smiled. We took Devon to the park today for Canada Day. It was not too bad, but Devon is not comfortable around crowds of people yet.
July 2 – Darlene, Dustin and Shawn Gordon came to visit today. Shawn got Devon to laugh a couple of times.
July 3 – I was looking at Devon and I said, "my boy". He turned and looked at me and mouthed "my mom"! Jamie took him to the park and sat him on the grass again. She sat in front of him and had her elbow on her leg and here head resting on her hand. Then Devon copied her! She said, "what a beautiful day to just sit and chill" and Devon whispered "ya" and then sighed and stretched his arms out. It was a kodak moment!
July 5 – Devon weighed in today at 102lbs.
July 8 – Devon started his exercise therapy today.
July 9 – We discovered today that loud or sudden noises scare Devon and he starts to cry when he is scared.
July 11 – Jamie was standing up with Devon and he was moaning a lot. Jamie asked him "what’s the matter buddy?" and Devon said "mom" real loud!! He missed his mom today.
July 12 – We put Devon on the wheelchair swing in the playground today. He just loved it! Doug pushed him for about 20 minutes.
July 13 – Jennifer took Devon to the carnival today at Wascana. She helped him a bit but mostly made him play the games by himself. He did awesome. He really liked the water gun and could hold and spray it by himself. At the fishing game he won 5 prizes! Jen said he had lots of smiles at the carnival.
July 16 – Jack and Kathy came to visit today and when Devon saw Jack he whispered "Jack".
July 18 – Cody got to see his uncle Devon today for the first time. Devon really enjoyed him being there and watched him constantly.
July 19 – A big visitor day today. Melissa, Danette, Heather and Christina came up. Later on Grams and Auntie Kathy came up. Devon had some tears when Grams was saying goodbye. We found out today that Devon can go for his first home visit on Monday! Yeah!
July 20 – When I was talking with Devon’s morning nurse she said, "Devon gave Jeanette a big hug this morning". Devon looked at her and put his finger to his lips saying "ssh, be quite". It was so cute! I don’t know if it was his secret or if he didn’t want me to know he was hugging another woman! It was funny.
July 22 – It is discovered at 11:30 p.m. that Devon had been given an overdose of medication. An ambulance was called and we were at the Emergency Room before midnight. It was very scary for the first 5 minutes we were there as his heart rate was so high, but then they administered a couple of iv’s and kept him on the heart monitor. After a couple of hours he was in the clear. He had to stay for observation and we got back to Wascana at 7:00 a.m.
July 25 – Our first home visit! Devon did real well on the Para Transit. He watched out the window the entire way. When we pulled up to the house he was wide eyed. He stayed that way for 45 minutes. We took him into his room and he just looked around at everything. When the therapists arrived Devon was sitting in the kitchen and when he saw them at the back door he motioned for them to come in! It was great.
July 26 – Darlene and Elaine came and while Elaine was giving Devon his back rub he leaned forward as far as he could go in his chair. Saying – get my whole back, I guess.
July 31 – We have asked to have Devon’s Dantrolene decreased. We don’t believe he needs any muscle relaxants.
August 1 – Darlene gave Devon a couple of Dustin’s suits to wear to Jamie and Ryan’s wedding. We let him pick which one he wanted. We took him to the rehearsal tonight and he did great. It was the first time we got to use the volunteer van and everything went very well.
August 5 – The doctor agrees to decrease the Dantrolene now!
August 6 – Darlene came to spend the morning with Devon as the rest of us were getting ready for the wedding. Darlene said he slept most of the time! He did great at the wedding too. He was very alert, looking around the hall at everyone and everything. He danced with Jamie to her special song. He was moving from side to side and Jamie told him that everyone was looking at him so he started smiling real big and looking at everyone! We got back to Wascana at 11:00 p.m. He was beat!
August 11 – Jennifer took Devon outside in the courtyard and it began to rain. She opened up the umbrella and Devon held it by himself. Jennifer wanted to go in but Devon didn’t. She kept asking "can we go in now" and he would shake his head no. Then she said, "come on Devon I am getting soaked". He reached out and put the umbrella over her head! Very funny Dev.
August 13 – Home for a visit from 1:00 to 7:30!
August 15 – The balloon on Devon’s PEJ broke through the night. I told him we would have to go back to the RGH to repair it. Devon got upset so I told him nobody was going to hurt him and that I would be with him through the entire procedure, and he gave me a big hug and then a little smile. Jeanette put in a temporary tube.
August 16 – Devon’s temporary tube came out last night! Now he can’t have anything until the surgery. Poor guy. We are giving him ice chips.
August 17 – Had his surgery and everything went well. He has not had anything for over 47 hours! As soon as we got back to Wascana we started his feeds and everything went good.
August 20 – Jeanette told us today that Devon’s SATs have been so good for so long now that they are only going to do them once a week now instead of everyday. You have passed another bar Devon! Tammy and Jeff came today to see Devon. Devon seemed happy to see them and they were so happy to see how good he is doing. Dad and Devon were sitting outside watching the fountain. Devon turned and looked at Doug and said, "dad, dad, dad". In the evening we went home for a couple hour visit. Grandma and Grandpa came over.
August 23 – Dr. Larson has decreased the Respiradone to help Devon wake up some more. We decided today to give Devon a taste of a lollipop. We put in it in front of his face and his eyes got real big and he instantly had a lick. Then he went crazy with the licking! It was awesome!
August 24 – Auntie Wendy, Uncle Dwayne and Evan came to visit Devon today. Auntie showed him the pictures from the wedding and Devon really enjoyed looking at them.
August 25 – Sara Harrison and Melissa Charbonneau came up today. They were both so happy that Devon remembered them! Devon reached out to his dad for a hug today.
August 28 – Home for a visit again! Jamie and Austen came over and then Dustin came to hang out with Devon for a while.
August 31 – When I arrived at Wascana this morning Devon was sitting out in the hallway and when he seen my coming down the hall he raised up his hand and was waving at me! I gave Devon his lollipop again and he held it by himself.
September 3 – Doug and I took a couple of days off and Jamie, Jennifer, Jodi and Darlene spent the two days with Devon. Everything went well but Devon was a little sad. Darlene and Mackenzie took him outside and he showed them how he can move across the monkey bars. Darlene said it was the best visit with Devon they have had!
September 4 – Jamie told Devon that we were back today and his eyes got real big and he smiled. Melissa and Derek came up too and they were talking to Devon about "old times" and he had some smiles for them.
Thank you so much you guys! We REALLY needed those couple of days off and could not have done it without you!
Devon was so excited when we walked in. We hugged and kissed for a long time, he didn’t want to let go. We spent the evening just pampering him.
September 5 – We went home today until 9:00 p.m. Jennifer and the boys came over and Devon loved watching the boys playing. When Caiden got up and walked across the floor Devon’s eyes just about popped out of his head!
September 6 – Devon started school today! He goes right here at Wascana and will attend Monday to Friday – 9:00 – 11:00 a.m. and 1:00 to 2:45. A huge step Devon!
September 9 – In school today Devon painted a picture. His teacher showed it to me and I could hardly believe it. It was awesome! Melissa and Sara came today and gave Devon some presents. He gave them the "thumbs up".
September 13 – Darlene and Elaine came today and while Elaine was giving Devon a massage he kept leaning forward for her to go farther down his back! Jamie, Ryan and Austen also came and they brought their kitten for Devon to see.
September 14 – Weighed in today at 106lbs!
September 16 – They needed to take Devon’s chair today for repairs. In the interim they put him in a broda chair (which he truly hates). When I got there a few nurses were standing around him trying to make him comfortable in this chair but were not having any luck. I pretended to "save him" and he just loved that! I got him so comfy in that chair he didn’t want to get out.
September 18 – Dad took Devon to the dining room to build his model. He laid all the pieces out on the table. Then Doug would ask him for a certain part and Devon would look at all the parts and would pick up the right part and give it to Doug! It was great!
September 21 – We brought Devon home today for Jennifer’s birthday. He really enjoyed watching his nephews play. We spent some time in his room and I told him all the changes I did with painting his dressers and dad ripping out his old carpet and so on and he gave me the "thumbs up".
September 22 – Jamie brought up a "big" deck of playing cards. She asked Devon if he wanted to play and he said yes. They played fish but Devon never wanted to give up his card! Devon saw Jamie writing in the journal and indicated to her that he wanted to write in it. She gave him the pen and he did write something. Not sure what it says but he did it all by himself.
September 25 – Lots of visitors today. Melissa, Derek, Christina, Cayla, Curls and Jamie. He remembered everyone and they were so pleased.
September 27 – The dietician came up to talk to us today about Devon’s feeds. She is now going to give him 2500 calories daily, that’s up by 500. Way to go Devon.
September 28 – Devon had his school pictures today. He is also noticing his hands more today. He is watching them a lot. He has an alphabet board on his tray stuck there with sticky tac. He had pulled it off his tray and then pointed at each little piece of sticky tac to show me where he stuck it! It was so cute.
October 1 – Devon got to talk to mom on the phone today! Doug said he was answering yes to my questions. When I was saying goodbye I said, "can you give me a kiss?" and Doug said he was kissing the phone!
October 2 – Another good day for visitors. Melissa, Cayla, Christina, Derek, Calin and Brett all came up. Devon was smiling all day!
October 5 – We had a conference with Devon’s teachers today. They told us how they now know what Devon is capable of. They are very impressed.
October 8 – Devon was watching the Rider game today and every time someone came in the room and started talking he put his finger to his lips saying "shhh"
October 10 – What a great day for visitors! Ashley, Cayla, Tegan and Chane came to hang out with Devon. They took him for a long walk outside. Then later on Grams and Auntie Kathy came too. In the evening Adrianna and Erwin came and visited for an hour. So much love today!
October 12 – Devon has made a new friend at Wascana. His name is Kris and he has a brain injury also. They are in the same class at school and it is obvious they like spending time together! Devon waves at him and gives him the peace sign. Darlene and Elaine came to visit and Elaine was very impressed by the increase in Dev’s strength.
October 17 – Devon weighed in today at 104lbs. He lost a couple of pounds, but nothing to worry about.
October 18 – Jamie came today and she saw Devon’s school picture proofs and couldn’t stop looking at them. She said he looks so much like himself in the picture.
October 19 – Tonight was Devon’s first night at bowling. He really enjoyed it and scored 257! He will go bowling every Wednesday night.
October 21 – Today I took Devon for a hair cut at the hair dressers here in Wascana. He did real good. Everyone kept telling him how good he looked all day and he just loved that! Melissa and Derek came today and Devon gave them lots of smiles.
October 23 – We went home for a couple of hours today and when we got back to Wascana Derek and Brett were there. They talked about "old times" and Devon was listening very intently. When Brett told him he misses him, Devon blinked the one blink (meaning yes, me too).
October 28 – Derek and Brett came to play Nintendo with Devon. Devon tried for a little while but then surrendered the controller and was just happy watching the guys play.
October 30 – Devon came home today. Jamie and Austen came over and we all carved pumpkins. Devon did great! He really enjoyed scooping out the insides and getting his hands all dirty!
October 31 – Devon really liked his treat bag! Especially the lollipop – he grabbed it and put it in his mouth with the wrapper still on! I guess he couldn’t wait. He got a talking board from Grandma and Grandpa and we played with that for a long time. Devon does good with it, it’s just a little hard for him to push only one button at a time. We will practice.
November 2 – Jamie, Ryan and Austen came today. Devon was very happy to see Ryan. When Jamie asked him if he had a good day at school, he said no. She asked him if it was boring, and he said yes!
November 4 – Devon’s therapists told us how good he is doing with his walking. They just can’t believe it!
November 9 – We went home today for Dad’s birthday. Jennifer spent the evening with him at Wascana. They played with his talking board and Jen said he answered every question it asked him right. Devon weighed in at 108.4lbs.
November 11 – one year today. Today was a little hard to get through but turned out to be a good day at home with Devon. We walked him from his bedroom to the kitchen and he did great. Jamie, Austen and Jodi came home today too. When we got back to Wascana Jill was there waiting for Dev!
November 14 – Darlene, Elaine and Dustin came up today. Elaine had never seen Devon stand up so we did a bit of showing off!
November 16 – Today we went to the RGH for Devon’s swallowing assessment. Unfortunately, he failed – but there is improvement from the last time – about 50%, so we are happy. Devon did so good with everything, I was so proud of him.
November 18 – Devon played Yatzee today at school and he shook the dice by himself.
November 19 – Grams came today and spent the afternoon with Devon.
November 21 – Melissa, Christina, Chane and Heather came today and Melissa held up a paper that said "mom" and asked Devon what it said. He said "mom". Then she held up a paper that said "Devon" and asked him what it said, and he pointed to himself.
November 22 – Jodi and Garrett came to spend the evening with Devon. Devon showed off moving his chair by himself and even did a few "funny" moves!
November 23 – Grams came today and took Devon to music therapy and she got to see him bowling too. He is in such a good mood today.
November 27 – Devon came home for the day. Jamie, Austen, Jodi, Garret, Grandma and Grandpa all came over. Devon really enjoyed himself. When we got back to Wascana we gave Dev a bath and then weighed him. 109lbs today! Way to go Devon!
November 29 – Sask Abilities called today to say we got a bed for Devon! Now when he comes home he can spend the night!
December 3 – Melissa and Ashley came to visit this afternoon and then Jamie, Ryan and Austen came. Devon loved all the attention today. We cruised around in the evening and Devon kept pointing at all the Christmas decorations.
December 4 – We took Devon to the mall for the first time today. He did real well. Once he started to get upset but it quickly passed. Then we went home and had an awesome day. Doug was singing a rap song to Devon and Dev broke out laughing! It was great!!
December 6 – Jennifer was painting with Devon today and Devon decided he wanted to paint Jen’s face instead! He made her a lovely purple face!
December 7 – We had our conference with Dr. Laursen and the team today. We were very pleased with Dr. Laursen. Everybody gave a good report of Devon, especially his teachers!
December 9 – Devon weighed in today at 109lbs! Mom made him laugh today by blowing a spit bubble! (no kidding, he never saw mom do that kind of stuff!)
December 12 – We took Devon to the games room today and he was able to play shuffle board with us (somewhat) and he really enjoyed it. Lots of smiles.
December 14 – Devon’s teacher called us today to tell us how well he is doing. He is using his spelling board and communicating with his teachers and they are so very impressed with him.
December 17 – We came home for our very first overnight. Everything went so good. Devon fell asleep in his chair at 10:00. We took him to his room and got ready for bed. We got him all tucked in and he just looked around and then he moaned a few times, closed his eyes and was fast asleep. We cried as we stood over his bed watching him. He was home.
December 20 – When we got to Wascana today I told Devon I missed him all day. I asked him if he missed me too and he nodded, and nodded, and kept nodding yes!
December 21 – Devon went to the Imax today with his class. He really enjoyed it.
December 24 – We are home for Christmas! Devon did great, even with a crowd. Grams, Jamie, Ryan, Austen, Jennifer, Cody, Caiden, Jodi, Garrett and Grandma and Grandpa all came over. It was wonderful. Devon had a whole pile of presents! He really enjoyed opening them. He tired around 10:00 and we put him into bed. He curled up and snuggled into his pillow and was out in a minute. Merry Christmas sweetheart.
December 25 – We had a wonderful day at home. We headed back to Wascana at 4:00 and gave Devon a bath and settled him in with a good movie. He was very content.
December 26 – Derek and Brett came to visit Devon over Christmas but we weren’t here! They left an awesome message for Devon and he smiled when we read it to him. We played with his remote control car he got for Christmas. He is learning to operate the gas while Dad steers. He really likes it!
December 28 – Devon walked the bars in physio today! He also got a visit from his cousin Tracey and new little second cousin Trinity. Tracey had not seen him since November 2004 and she was shocked to see how good he is doing.
December 29 – Adrianna and Erwin came to visit. Jennifer was with Devon for the evening so we missed her, but Jen said they had a good visit.
December 30 – Devon was sick again today. The charge nurse came to have a look at him and she said they are going to make arrangements to have Devon’s PEJ redone, as they feel this is what is making him sick. Poor guy.