At this time of year I suffer from Sports withdrawal. College Football and Basketball are months away and Stanley Cup playoffs do provide some relief from the boredom but tonite...there is nada. Not even NBA playoffs. Baseball doesn't get remotely interesting until September...so what to do???? Even Dancing with the Stars is done for another season. At least when that show came on I knew that was my cue to head downstairs and hideout until the pain stopped. All I can say is how glad I am for Texas Hold'em on my Blackberry (Currently up $3.6 million).
I suppose it's nights like this where you should seize the opportunity to do family night. I guess we did...as best we could on a rainy, miserable evening. The one highlight was the two deer who wondered into our yard. They were about 30 feet from our deck. It isn't unusual to see deer in our yard, but I've never seen them that close to the house. The kids have been good this evening...only minor bouts of hair pulling, biting, and pinching. (NO not talking about Susan) The kids are now off to bed and it's quiet. The one thing that we are so thankful for is that both of them are good sleepers. Sometimes they are a challenge to get to bed...but once they are settled we don't hear from them until morning.
Tomorrow is a big day. We get to meet Nicole's Kindergarten teacher. I am confident Nicole will make a good impression. We'll leave Russell at day care...we don't want to scare anyone. On the other hand, it would be good for Russell to meet the Principal...I have no doubt they will become well acquainted in the future.
What else is new??? Winnipeg has a new hockey team? Not quite. Canada Post is going on strike? Not sure. However...we should know about both issues by the end of the week. Maybe. One I hope happens...the other I hope doesn't. If the postal workers go in strike...that will not be good for anyone at CPC. Even the threat of a strike is having a negative impact on our business. There are lots of businesses including government who are already making other arrangements. Not a good situation. Thankfully I don't have a lot to worry about crossing picket lines. It just means a detour through Tim Hortons and then up to the 2nd level skywalk and into the office. We can avoid the entrance to the building because the buildings are all connected by public access skywalks. No issues.
I guess we will see how the week will play out
Monday, May 30, 2011
Thursday, May 26, 2011
Little Steps
Every once in a while you have one of those "a-ha" moments with your kids. You are with them everyday so you don't notice how they are growing or the changes in their personality. Then; once in a while you observe them doing something that you think to yourself; "wait a minute...i don't remember seeing them do that before."
Today was one of those days. We had a follow-up visit with our ophthalmologist regarding Russell's eye surgery. I remember very distinctly taking him to an appointment in February for the pre-op assessment where he was fussy and irritable. He didn't want to play in the waiting room but didn't want to sit on my knee either. Today's trip was totally different. He was running around and playing with the toys. He was smiling and happy and OK with the world. When it came time for his examination he insisted on climbing into the examination chair on his own and he did everything on his own. Just him and the Doctor while Mom, Dad, and Nicole looked on. Was he a handful....yes....but he did it all on his own. Then we went down to the cafeteria to get some Timbits (a time honoured tradition) where he walked the entire way. This boy does not like being carried. He just needs to be watched closely and herded a little. All in all...i was amazed on how much his personality has changed since our last visit. He has a real little personality. Then there is Nicole, who takes all things in stride and is as cool as a cucumber...the total opposite of her little brother. Her only concern is "what are we doing now" and can we get "Fries"???
As far as the result of Russell's appointment...well I am attaching a picture. You tell me.
The words I heard from the Doctor was..."ideal." Now Mommy and Daddy have to concentrate on getting the boy to wear his glasses. The surgery may have straightened his eyes but he still needs the glasses. Another little challenge that we need to deal with.
Today was one of those days. We had a follow-up visit with our ophthalmologist regarding Russell's eye surgery. I remember very distinctly taking him to an appointment in February for the pre-op assessment where he was fussy and irritable. He didn't want to play in the waiting room but didn't want to sit on my knee either. Today's trip was totally different. He was running around and playing with the toys. He was smiling and happy and OK with the world. When it came time for his examination he insisted on climbing into the examination chair on his own and he did everything on his own. Just him and the Doctor while Mom, Dad, and Nicole looked on. Was he a handful....yes....but he did it all on his own. Then we went down to the cafeteria to get some Timbits (a time honoured tradition) where he walked the entire way. This boy does not like being carried. He just needs to be watched closely and herded a little. All in all...i was amazed on how much his personality has changed since our last visit. He has a real little personality. Then there is Nicole, who takes all things in stride and is as cool as a cucumber...the total opposite of her little brother. Her only concern is "what are we doing now" and can we get "Fries"???
As far as the result of Russell's appointment...well I am attaching a picture. You tell me.
Monday, May 23, 2011
My Trip to Edmonton
Going to Edmonton is a bit of a strange experience. It brings up lots of emotion; good feelings and bad. When the Stollery called me, about a month ago, with an invitation to come to a retreat for the Pediatric Cardiology department I was really unsure what this was all about. It brought up lots of questions. What was the purpose? Who was attending? Why me?
As I learned more about the day, I found out that between 60-70 staff would attend the day and that 6-7 parents were invited. The agenda for the day seemed directed at staff and this brought up more concern as to why parents were invited. To get ourselves organized we, as parents, with help from the Family Centred Care Council arranged a conference call about a week before the meeting to get our ideas and thoughts together. This was a wise decision and a great experience to spend an hour or so talking to other parents and discussing things the Stollery does really well and the other things...not so much. After this call I was still a little skeptical of why we were invited...being a little pessimistic; I thought it may just be a nice PR move and not really amount to much.
So last Thursday morning I was off to Edmonton. The nice thing about this trip was that no member of my family was being admitted to hospital. I piggybacked this trip onto a work trip. I spent Thursday at Edmonton Mail Processing Plant and met our Postal Transformation team there. This was a nice diversion from hospital issues and I toured the facility and met a lot of people who were just voices on the phone to me. The trip was also very productive and the trip was starting on a good note. In the evening, I spent dinner with my cousins and Aunt in West Edmonton where we had a chance to catch up on the events of the last two years since we left Edmonton.
The Retreat
As I stated earlier...I really didn't know what to expect from the retreat. From the agenda, and seeing many of the names of those participating, I knew there would be lots of familiar faces and a lot of memories. What input we as parents would have during the day was a total mystery to me.
I arrived at the conference centre and found my name tag and saw that all of the seating was assigned. The 60-70 participants had grown to over 100. I proceeded to my table. Of the 8 people at the table I knew 4 or 5 on a first name basis. This would be a recurring theme throughout the day. All of the tables were setup so that you would have a Doctor, nurses, Techs, social workers, and child life workers sitting together. No clicks. The parents were also spread throughout the room and did not sit together. The day began with a parent who made a presentation with input from all of us parents. We had provided pictures and our own stories for her presentation. She told our stories and made a strong case for parents as advocates for their children. She, very candidly, challenged the hospital to include parents as part of the team and that their success was our success. It was an excellent presentation. This really set the tone for the entire day.
As the day continued; we had three breakout sessions where we broke into small groups to discuss three prepared topics. I was completely amazed at how many times I was asked for input on seemingly technical issues. As an example, I was asked my opinion on the hospital's effectiveness in treating chylothorax. In fact, in many situations I found myself carrying the conversation and providing a perspective from a unique point of view. I was totally amazed. As we broke for lunch; some of us parents got together and shared our experiences from the day and I found I was not alone. Many of the other parents were being peppered with questions just as I was.
At each break...there was constant stream of people who came up to me and asked about the rest of the family. No one had any idea that we were coming and especially me being from Winnipeg. Being from Winnipeg, we have had no reason to come back to see the staff...so most of the staff only remember us from our hospital stay. It was also really nice to have some long chats with a couple of people we got very close to when we were in hospital.
The day was emotionally exhausting. So many memories and so many familiar people. I saw the staff in a completely different context. The cardiac program in Edmonton has grown so much; I really saw a group of people who were struggling with a program that has outgrown itself. From my own professional experience I know how difficult growth is. It is extremely challenging and pushes the organization to the breaking point. I saw a different side of the staff. A group who want to take their department to a whole new level but they have no idea how to get there. I heard so many questions that indicated to me how much they want to do better. We identified a lot of weaknesses and challenges while validating a lot of success. All in all...a very amazing day.
What becomes of this day is up to the department. My understanding is that this group of people has never met like this before. I certainly hope it isn't the last. I strongly feel that the parents were certainly heard. The one thing I think became evident was the parent's commitment to the program. We are important stakeholders in the program and will certainly participate and assist the program whenever we are asked.
I spent Saturday visiting some of families we had met during our hospital stay. It was nice to catch up. Some doing well and others in some very challenging situations. During the entire trip I did not actually enter the Stollery...our conference was at an off site location. As I left Edmonton, I took a quick walk over to the hospital; walked in the doors and promptly walked out...not having any reason to be there.
As I learned more about the day, I found out that between 60-70 staff would attend the day and that 6-7 parents were invited. The agenda for the day seemed directed at staff and this brought up more concern as to why parents were invited. To get ourselves organized we, as parents, with help from the Family Centred Care Council arranged a conference call about a week before the meeting to get our ideas and thoughts together. This was a wise decision and a great experience to spend an hour or so talking to other parents and discussing things the Stollery does really well and the other things...not so much. After this call I was still a little skeptical of why we were invited...being a little pessimistic; I thought it may just be a nice PR move and not really amount to much.
So last Thursday morning I was off to Edmonton. The nice thing about this trip was that no member of my family was being admitted to hospital. I piggybacked this trip onto a work trip. I spent Thursday at Edmonton Mail Processing Plant and met our Postal Transformation team there. This was a nice diversion from hospital issues and I toured the facility and met a lot of people who were just voices on the phone to me. The trip was also very productive and the trip was starting on a good note. In the evening, I spent dinner with my cousins and Aunt in West Edmonton where we had a chance to catch up on the events of the last two years since we left Edmonton.
The Retreat
As I stated earlier...I really didn't know what to expect from the retreat. From the agenda, and seeing many of the names of those participating, I knew there would be lots of familiar faces and a lot of memories. What input we as parents would have during the day was a total mystery to me.
I arrived at the conference centre and found my name tag and saw that all of the seating was assigned. The 60-70 participants had grown to over 100. I proceeded to my table. Of the 8 people at the table I knew 4 or 5 on a first name basis. This would be a recurring theme throughout the day. All of the tables were setup so that you would have a Doctor, nurses, Techs, social workers, and child life workers sitting together. No clicks. The parents were also spread throughout the room and did not sit together. The day began with a parent who made a presentation with input from all of us parents. We had provided pictures and our own stories for her presentation. She told our stories and made a strong case for parents as advocates for their children. She, very candidly, challenged the hospital to include parents as part of the team and that their success was our success. It was an excellent presentation. This really set the tone for the entire day.
As the day continued; we had three breakout sessions where we broke into small groups to discuss three prepared topics. I was completely amazed at how many times I was asked for input on seemingly technical issues. As an example, I was asked my opinion on the hospital's effectiveness in treating chylothorax. In fact, in many situations I found myself carrying the conversation and providing a perspective from a unique point of view. I was totally amazed. As we broke for lunch; some of us parents got together and shared our experiences from the day and I found I was not alone. Many of the other parents were being peppered with questions just as I was.
At each break...there was constant stream of people who came up to me and asked about the rest of the family. No one had any idea that we were coming and especially me being from Winnipeg. Being from Winnipeg, we have had no reason to come back to see the staff...so most of the staff only remember us from our hospital stay. It was also really nice to have some long chats with a couple of people we got very close to when we were in hospital.
The day was emotionally exhausting. So many memories and so many familiar people. I saw the staff in a completely different context. The cardiac program in Edmonton has grown so much; I really saw a group of people who were struggling with a program that has outgrown itself. From my own professional experience I know how difficult growth is. It is extremely challenging and pushes the organization to the breaking point. I saw a different side of the staff. A group who want to take their department to a whole new level but they have no idea how to get there. I heard so many questions that indicated to me how much they want to do better. We identified a lot of weaknesses and challenges while validating a lot of success. All in all...a very amazing day.
What becomes of this day is up to the department. My understanding is that this group of people has never met like this before. I certainly hope it isn't the last. I strongly feel that the parents were certainly heard. The one thing I think became evident was the parent's commitment to the program. We are important stakeholders in the program and will certainly participate and assist the program whenever we are asked.
I spent Saturday visiting some of families we had met during our hospital stay. It was nice to catch up. Some doing well and others in some very challenging situations. During the entire trip I did not actually enter the Stollery...our conference was at an off site location. As I left Edmonton, I took a quick walk over to the hospital; walked in the doors and promptly walked out...not having any reason to be there.
Monday, May 16, 2011
So....What's New
It's been a while since I posted anything. I guess it has been fairly busy. Just starting to get into the spring and summer activities. Nicole is playing soccer two nights a week and work has been steady. A few other activites seem to be filling up the time as well. Russell is still a little terror. It is nice to see the kids running around the yard. They are both really enjoying the weather and are spending a lot of time outside.
Last week was a tough week. Since September we have been getting a daily report about a friend of ours from the Stollery. A young lady who had a transplant about 10 years ago. We met her parents when Russell was in hospital and her Dad and I have been exchanging e-mails over the last year. The last few months have had some big ups and downs. Since she went into the hospital in the fall we have received a short update every day; like clockwork. Last Wednesday morning there was no update. I didn't think about it at the time but about noon i checked my e-mail again and there was a very short message indicated she had passed away. Two things come to mind in that situation. The obvious sadness but also relief that she doesn't have to endure what must have been a horrendous ordeal. This is a girl we barely knew but we felt a real attachment to as a fellow transplant family.
When I was writing out care page I felt that my task was to report what was happenning with Russell and then later on, Susan. I didn't talk a lot about the people we met or their experiences. Some of the things we saw and experienced with other families were horrible and amazing. I can't underestimate how important it was for us to be aware of what was going on around us. Not to distract us but to learn and get a better understanding of our own situation. I can't tell you how many times Susan and I would talk and say to ourselves "I am glad we aren't in their shoes."
I made a comment to someone that we have some high maintenance friends. Yes we do; but they are some amazing friends. We have another little friend (another transplant kid) at the Stollery right now...hope she can pull off another miracle (she's done it before). When you know about these situations it is easy to be fearful about what may be in store for Russell. If there is one lesson we have learned through this whole process is that every kid makes there own way and are unique. What works for one doesn't necessarily work for another. There is no predicting what will happen. Most of our transplant friends and many others are kids who have already beaten the odds in one way or the other. Our journey is life-long and we just have to be prepared for both the good and bad.
Last week was a tough week. Since September we have been getting a daily report about a friend of ours from the Stollery. A young lady who had a transplant about 10 years ago. We met her parents when Russell was in hospital and her Dad and I have been exchanging e-mails over the last year. The last few months have had some big ups and downs. Since she went into the hospital in the fall we have received a short update every day; like clockwork. Last Wednesday morning there was no update. I didn't think about it at the time but about noon i checked my e-mail again and there was a very short message indicated she had passed away. Two things come to mind in that situation. The obvious sadness but also relief that she doesn't have to endure what must have been a horrendous ordeal. This is a girl we barely knew but we felt a real attachment to as a fellow transplant family.
When I was writing out care page I felt that my task was to report what was happenning with Russell and then later on, Susan. I didn't talk a lot about the people we met or their experiences. Some of the things we saw and experienced with other families were horrible and amazing. I can't underestimate how important it was for us to be aware of what was going on around us. Not to distract us but to learn and get a better understanding of our own situation. I can't tell you how many times Susan and I would talk and say to ourselves "I am glad we aren't in their shoes."
I made a comment to someone that we have some high maintenance friends. Yes we do; but they are some amazing friends. We have another little friend (another transplant kid) at the Stollery right now...hope she can pull off another miracle (she's done it before). When you know about these situations it is easy to be fearful about what may be in store for Russell. If there is one lesson we have learned through this whole process is that every kid makes there own way and are unique. What works for one doesn't necessarily work for another. There is no predicting what will happen. Most of our transplant friends and many others are kids who have already beaten the odds in one way or the other. Our journey is life-long and we just have to be prepared for both the good and bad.
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