What's goin' on

I must admit that I have become extremely lax about posting on here.  What you can read into that is that things are pretty quiet and somewhat routine around the Lepp house.  For the most part that is true...and that is great news.

So here is a quick update on what's going on:

Thanksgiving weekend - On our way home from
Pelican Lake....very very quiet!

Thanksgiving - We had a very busy Thanksgiving weekend.  We hosted the Thanksgiving dinner for the Kusela clan on Saturday.  It was a low-key event (which is our style) that was relaxing and the weather was fairly nice too.  The kids were able to play outside and enjoy a bit of fresh air.  On Sunday...we packed up the kids and headed to Pelican Lake, to my brother's cabin where we had the Lepp Thanksgiving dinner.  Yes turkey and pie...two days in a row.  Was feeling a bit like a stuffed turkey after that.  In spite of a lot of activity I think we were able to relax.  The drive was very enjoyable.  On the way home both kids were "zonked" out.  We did not hear a peep from the back seat the whole trip.  I think they had a good time.

Nicole on her first day of school

School -  Nicole is absolutely "psyched" about school.  She really looks forward to going and is really enjoying herself.  Nicole has always been a little "iffy" about new things.  It has always taken her a bit of time to adjust.  This has not been the case with school.  She has adjusted amazingly well.  My only issue is that she doesn't tell us a whole lot about what is going on at school.  I think maybe its Dad being a little bit "nosey."  Perhaps, it is a lot to expect a detailed synopsis of the day's activities from a 5 year old.  I guess we'll see how it goes when we go to parent-teacher interviews.

The evil grin

Russell - The boy has been doing really well.  Very steady progress with him.  He is still living on a diet of Rice Krispies and Peach Juice...but we're working on it.  We are now having a child development person come to our house and work with him.  They want to work on a lot of his "delayed" issues.  Eating, speech, and any other issue that they think he may be lagging.  We have had a few visits, and the consensus us that is doing very well on his own.  Russell is probably one of the least complicated cases they have to deal with as I can imagine they deal with some very complex kids who may have autism, fetal alcohol syndrome, or other challenges.  They just want to help Russell pick up the pace and getting him to where a 3 year old should be.  Developmentally he is ideal fora 2 year old...unfortunately he is 3.  Medically, Russell is putting up some stellar bloodwork numbers...very happy about that.  We have been having to give Russell a shot every two weeks to help with anemia.  Because of his improved bloodwork numbers we have been able to discontinue giving the shot.  You don't know how happy we are about that...it totally sucks to have to give your kid a shot.

Maggie - Our neglected member of the family has developed her own issues.  She developed a fairly nasty rash.  We have been trying to treat this since spring without much luck.  This week I took her into the vet again and we are now thinking it is a food allergy.  So we have her on hypoallergenic food and she is back on anti-biotics and some prednisone.  I guess you can't be a member of this family and not be on some meds.  We give Nicole vitamins just so she doesn't feel left out at "Med time."

I guess the only people I haven't talked about are the Mom and Dad.  The Mom and Dad celebrated our 19 years together on Oct 3.  19 years and we still bicker and argue like champs.  You think one of us would have caved by now.  I guess we are both stubborn.  Oct 3 is also our 3 year anniversary of Russell arriving in Edmonton under very adverse conditions.   That was a bit of a challenging week for me.  It's a significant memory to me but it doesn't hold a lot of significance to Susan.  She always says her big anniversary is the day of Russell's transplant.  I guess we all process things differently.

I think we're all up to date now....

What I Did on my Summer Vacation

As the days get shorter and the kids are heading back to school; the sure signs that Fall is here.  This is a very different fall for us.  Our not sol little girl has embarked on her scholastic career.  Hard to believe she is old enough to be going to Kindergarten.  This has brought back a lot of memories of my early school days.  One of the activities from school that I remember was discussing or writing about what I did during the summer. 

This has been a much more typical summer than what we can remember in recent years.  Other than Russell's sudden meeting with the floor, and his resulting broken arm, our summer has been relatively hospital free.  Thinking back now I hardly remember Russell breaking his arm.  He was only in a cast for 4 weeks and even when he was in his cast he really didn't slow down much.

Our summer was actually enjoyable for the first time in a long time.  We did things around the yard, went to the park, and even travelled a bit.  Normal things.  The past few years having a big yard has been more of a burden than a place to relax.  In between running around to medical appointments, being busy at work, continual rain and just trying to keep up with life.  Our yard has been sadly neglected.  Finally, this summer I got a chance to get a little bit ahead of the weeds and mowing the lawn.  June was very wet but July and August we received almost no rain.  I took a couple of weeks off in July and August and focused on sprucing up the flower beds and trying to clean things up a bit.  I must admit having things a little tidier does make you feel like you can enjoy the yard a bit more.  Today was a gorgeous fall day and it was so nice to walk around and not see so many unfinished projects.  Well....let's not kid ourselves...I have planted some lawn and I still need to do a few odds and ends but at least I can see the light at the end of the tunnel.




I'm not a big fan of the look of chain link...but it is low maintenance.  I thought this mini-retaining wall made the fence look pretty good.

Getting close...Just need to get lawn planted






Note all the footprints on the sidewalk....I had lots of little people help with hauling topsoil

We planted a few plants...will probably do some more.  Even a little bit made a big difference.



Holidays & Birthdays

I haven't been posting much on here lately.  For those who know us; that is probably a good thing.

We have had one of the quieter summers in recent years.  This has been a welcome change.  After working for 20 years in jobs where summer is the busy season; it has been a welcome change to be able to take holidays in the summer.  I've taken a week off in July and taking another in August.  A much needed break.

Russell's broken arm is mending nicely.  He is out of his cast and up to full speed.  His arm still has a "bend" in it but because he is so young the Doctors anticipate it will straighten out on its own through growth. 

We celebrated Russell's 3rd Birthday on Friday (Aug 5).  Although Russell was born with a heart defect and their could have been a lot of issues when he was born, for both Susan and him.  Fortunately,  his birthday brings back very pleasant memories of a very perfect day.  Everything went so well the day he was born.  The days following...not so much.

Kids have an innate ability to "keep things real."  Russell (and most kids) get spoiled rotten on their birthdays.  They get inundated with toys and presents.  I really had to laugh yesterday that in the midst of an avalanche of toys; what were our kids doing for hours yesterday?  They played in our car in the drive way.  Apparently there are lots of switches, levers, and lights that can keep kids entertained for hours.  I put the car back in the garage at night; where i turned off all of the interior lights (every one) adjusted the mirrors and cleaned up all of the CDs that were strewn about the front seat.  Not a big deal considering we got a couple of hours of peace and quiet.

Summertime

I've been meaning to post something for a while but just haven't gotten around to it.  Believe me it's not because things have been dull that's for sure.

Where to start...Nicole finished up Soccer season at the end of June.  She had a bit of a challenge this year which was not a total surprise to us but a little frustrating.  From playing with her in the backyard she doesn't lack any skill, but she is a little intimidated by some of the more competitive kids and tends to hang back a bit.  Nicole has an extremely kind personality and hyper-competitiveness just isn't her.  She's also 5.  The bottom line is that by the end of the season she was more more involved and improved a great deal.  She had a lot of fun and made some friends who she will be seeing in the fall at Kindergarten.

Our little strike/lockout at Canada Post was very anti-climactic and bordered on being dull.  The strike has absolutely no effect on our work in Postal Transformation which is full steam ahead.  Our project is moving like a steamroller across the country.  The Winnipeg project will be complete by the end of September and we're moving right through Regina, Saskatoon, Edmonton, Calgary, and the "Big One" Vancouver will be an amazing project. 

What else is going on....hmmmmm....let me think....ah yes....the "Russell."  Our little boy is up to his old tricks.  Many of you know that two weeks ago he broke his arm.  I guess he missed Emergency.  We broke a speed record getting in and out of the hospital.  He broke his arm at about 8:00 in the morning...X-Rays in Selkirk...transfer by Ambulance to Children's....set the bone....cast...another X-ray and home by 1:30 in the afternoon.  We were at a total loss as to what to do with the rest of the day.

One highlight for me was to have two experiences, in the past few weeks, to be reminded of how far both Nicole and Russell have come.  Near the end of the school year we had a Kindergarten orientation with Nicole at her new school.  It was quite an experience to see the school, her future classmates, and other parents.  It is so hard to believe it was only a few years ago that we had no idea we would ever have a little girl like her and now she is heading off to school.  I think both Susan and I are going to be total basket cases on her first day of school.  I also had a unique experience to take Russell to his child development assessment.  Russell is significantly behind where he should be due to his medical adventures.  He is now almost three but is quite a ways behind where he should be related to his growth and development.  It was very emotional to observe his assessment as he did the activities he was asked to do.  I wasn't upset or concerned that he is behind.  I was totally blown away at what this little boy can accomplish and how far he has come (he is nothing if not feisty) and he is making fantastic progress.  We just have to remember "baby steps."

Thanks for your Prayers

I read an interesting article in the Free Press this morning regarding prayer in schools and how some school divisions are skirting some of the rules related to this activity. 

I find it interesting to observe people's reaction to this.  In a supposed age of tolerance and acceptance I find it peculiar that those who believe in a higher being are treated as uneducated simpletons who are unsophisticated throwbacks from the dark ages.

It made me chuckle a little bit as I recalled an old bumper sticker that says "As long as there are tests...there will be prayer in schools." 

When we were in hospital with Russell in Edmonton.  The topic of prayer and miracles came up a lot.  There were so many people who told us they were praying for Russell and our family.  It was particularly interesting to hear that comment from people that I had no idea had a belief in God or prayer.  Many have referred to Russell as our miracle baby.  I will tell you first hand, that there is nothing that has happened to Russell that cannot be explained by science.  On the other hand, when you start noting all of the coincidences and circumstances that had to occur for Russell to survive you then begin to think that this all could not happen by mere chance.  The list of events which had to take place for Russell, is lengthy and remarkable.  This is where I contend that this is no chance occurrence but part of a master plan. 

So, should there be prayer in schools?  News Flash...there already is and always will be.  I don't think that will ever change.  I really don't think that is the issue.  My belief is that there is an element in society that does not want children exposed to any opinion other than their own or whatever happens to be politically correct at this moment in time.  The problem with political correctness is that it changes from one moment to the next...you need a scorecard to keep up.  From personal experience when your child is sick or possibly dying in ICU political correctness goes out the window pretty quickly.  That's when you find out what is truly important.

For all of those who prayed for us and continue to do so....Thanks.  We believe it has made a huge difference.  Both Susan and I have felt so supported through people's prayers.  For those who are atheists and do not believe in God or prayer...that's fine with us too.  If you want to support us...I have an easy solution...send cash!http://www.winnipegfreepress.com/breakingnews/schools-ignore-prayer-rules-124478269.html

Attention Nurses

I am currently listening to a demonstration in support of the CUPW in front of our offices at 266 Graham.  Not really a big deal except I am totally disappointed that the Canadian Federation of Nurses has come out in support of CUPW.  Having seen the first class work that nurses do, it does an extreme disservice to nurses to lump themselves with the ideologues from CUPW.

I would strongly encourage any nurses to contact their local union office to denounce the appearance of Linda Silas from appearing at this demonstration.  My personal opinion is that the nurses union should be careful who they associate with.  CUPW is involved in some dubious activites not only nationally but internationally.  For a little more information on CUPW http://en.wikipedia.org/wiki/Canadian_Union_of_Postal_Workers . 

I would hope that the nurses wouild be a little more progressive than the neo-70's mentality coming from the postal union.

                "That's just my opinion...I could be wrong"   - Dennis Miller

Strike!!!!!

Everybody loves a parade!

That's what was greeting me this morning as I arrived at work this morning at 266 Graham.  So off to Tim's I went.  I made a shocking discovery.  The lineup at Tim's seemed a lot more intimidating than crossing the picket line.  I quickly bolted from the ludicrous lineup at Tim's and scooted off to Robin's where they were waiting with my large double double. 

Since I am within earshot of the picket line from where I sit...I can hear some of the commotion going on below.  It's all fairly tame except about 15 mins ago they fired up the music.  Let's just say I'm not a huge country music fan! 

I was extremely shocked to read the Winnipeg Free Press this morning.  They had the gratuitous Postal Strike story...but what took me off guard were all of the comments from readers.  Usually you get a few wingnuts spouting off about whatever enters their brain and I don't pay a lot of attention to it.  This morning I was really surprised to see almost unanimously how the general public feels the postal system is NOT an essential service and the strike will have little to no effect on them.  Out of 50 or so comments I think only 1 or 2 had any pro-union sentiment. 

My fear is that CUPW and CPC have played a huge game of high stakes "chicken" and both may lose.  There are lots of changes happening at Canada Post...I think a lot more are coming.  Next stop...Workopolis????

The Week's Update

Lots of activity this week.

Nicole had a big day yesterday.  We got to take her to Kindergarten orientation at Birds Hill School.  She was very shy at first, but she quickly got into the swing of things.  She is pretty excited now.  It was nice for us to see the school and meet a few of the staff.  I think Mommy was very proud of her little girl.  They grow up so quick.

At 11:00 yesterday we got the news that most Winnipeggers have been waiting for about 16 years.  The NHL is back.  We watched the news conference online here in the office.  It was interesting to hear some of the discussion after the news conference.  Of course, there are so many naysayers who say this will never work in Winnipeg; it's just too small.  I think there were some interesting points made about Winnipeg and the positive state of the economy here.  If you just look at the cost of Real Estate you will soon get a good feel for what the market is like.  If you think back 16 years ago and all of the changes that have happened in the province it is very encouraging.  I just wish they could develop the technology to eradicate the elusive "pothole." 

I am very curious to hear what name they will come up with for the team.  I am definitely on the "anti-Jets" band wagon.  Why celebrate mediocrity.  I have heard one suggestion that I really like and that is the "Manitoba Blizzard"  I think it is totally appropriate to have a weather related name; after Hockey what do we all talk about..weather.  It totally fits.  I think it has a nice ring to it and has and sounds appropriately menacing.  I mean really...how scary is a "Maple Leaf?"

Strike Update:

June 2 at 11:59 PM is when we find out if CUPW is going to walk off the job.  Even though I work for Canada Post...I have absolutely no idea if it will happen or not.  Stay tuned.

Family Night !

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

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.

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.

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. 

"Attachment" Issues

In the business world there is a concept called "professional distance." This is a concept that outlines best practices for mixing your personal and professional life.  Especially, the relationship between an employer and employee.  Mixing your personal life and professional life (if you are a boss) with an employee can cause lots of issues.  I think there is also a similar concept in the medical world as medical professionals need to keep a certain "professional distance" from their patients.  I know there are very clear guidlines for Doctors and Nurses relating to relationships with patients.  This is becoming a much bigger issue now, as a result of social networking as it is very easy for a patient to be facebook friends with their doctor or nurse.  It is a very tricky issue.

Taking it one step further...I have thought about this lots in relation to our situation in the hospital.  We have been cautioned many times not to get emotionally involved with "the kid in the next bed."  This is good advice as we have had so much to deal with in our own lives...it would add so much more stress to start to worry about some of the other kids you see in the hospital and risk getting emotionally involved.  This has become a big issue for us lately; as in recent weeks we have received several waves of bad news regarding some of our friends we have made in the hospital.  A couple of these situations are very serious and quite troubling.  It really does get you down, as it just seems like one thing after another.  Then you start thinking "when is it going to be our turn."

In reality, it is very difficult not to get to know and be involved with the families and staff that you meet in the hospital.  We are on a first name basis with so many people.  From the Lab Techs who take Russell's blood, to people you meet in the waiting room, or families we exchange e-mails with.  You can't help but develop some relationships and get attached.  I think it is extremely important that you maintain perspective and ensure these are"healthy" relationships.  You cannot dwell on the negatives (and there are a lot of them.)  As we have become friends with many families and have gone through struggles with them...we choose to be thankful and think positively about our own situation.  We have had our rough times but right now we are "OK" and we choose to live in the moment.  There may be some hard times ahead (for us) but thankfully...today...things are good!  This does not mean we don't empathize and feel the pain others are going through.  God gave us emotions for a reason...I don't think it is wrong to use them.

Happy Easter ... and other things!

Happy Easter to all,

I've been fairly quiet on here lately.  I guess we can assume that no news is good news.  I suppose its true.  I have been very busy in the past month.  Managed to squeeze in a trip to Calgary in an amongst a bunch of meetings and trying to keep all of the balls in the air at home.  Busy is good...keeps me out of trouble.

Thankfully, Russell has been doing great.  His eyes look great after his eye surgery and we are very hopeful that the correction is permanent.  His biggest achievement of late is that he has finally made it onto a growth chart.  We have been getting close for a while now and we finally made into onto the curve.  It's amazing to be average!  Nicole starts soccer in a couple of weeks so that will be one other thing "to do."

About the election...

Inevitably health care comes up in these elections.  I'll save everyone lots of hassle...want to solve health care problems?  It's called cash!  You can be a little more efficient or hire a doctor here or there and tweak the system...bottom line is you need tons o' cash.  Any idea why we had to go to Edmonton for Russell's and Susan's care...I'll give you a guess.  They have gobs of cash in their province and they can recruit and hire big name Doctors and pour cash into Alberta Health Services.  It is also well known that Alberta Health is one of the more ineffciciently run provincial health care programs.  So I will make a bold logical step...strong economy = better health care.  It's not complicated. 

If I have learned anything since getting intimately involved with health care is the huge cost, in dollars, it takes to keep someone alive.  Everyone knows about the aging population and that people are living longer.  People do not often talk about kids like Russell who would never see their first birthday had it not been for new (and very expensive) technology.  I would love to see Russell's bill for our stay in Edmonton.  I know a few facts.  Our basic stay in hospital cost the Manitoba Taxpayer about $1400.00 per day.  That is just a bed...nothing special.  I was told that the cost of a stay in PICU can nearly double.  Then add the cost of two open heart surgeries, dozens of procedures, and on an on.  The cost is staggerring.  I think everyone can understand that the word "thanks" means a whole lot more to us now. 

My intent in not to minimize the human element of what health care is trying to do...but the harsh reality is that none of it can happen with out the dollars to support it.  The biggest challenge of the next 20 years is to figure out how to pay for it.  In many ways I think we will not have a lot of choice about what direction health care takes, despite what political party is in office, as it will largely be dictated by how much we can affrod to spend.  Harsh...but true.

Sniffles, Coughs, Fevers, and an Election

It's been a fairly quiet week.  Yesterday was a nice sunny day, and I was able to take the kids out in the yard for a bit.  Spring seems to be taking it's sweet time in getting here.

About the only excitement this week was a visit from the sneezes and sniffles.  Susan, Russell, and Nicole have all been battling some form of a cold this week.  Fortunately, I have been spared to this point.  Our weekend, has been fairly quiet as no one is really up for anything, except Russell.  He is the most active, short-tempered, beligerant little sick kid I have ever seen.  A cold does not slow this kid down. 

Speaking of "ill tempered" children...it seems we are in the midst of a federal election.  A very brief period of time where the citizens of this country are actually asked their opinion.  A unique opportunity that we should all be thankful for and give careful consideration in choosing leaders to guide our nation.  Unfortunately, this is an election that no one really wants and most people don't really care about. If opinion polls hold, we will likely be right where we started at the end of this election, with another Conservative minority. 

Just so you know my personal opinion...I'll be voting Conservative. I just didn't want that to be too mysterious.  I respect other people's opinions and I am OK with folks who are a little more left-leaning.  No one is perfect and I believe in forgiveness.  I just thought it would be fun to spice this blog up a little and talk politics.

My concern is "who" will be voting and "why" do they vote.  Voter turnout is actually quite pathetic.  People should take this much more seriously, and I wish they would.  However, if people don't care and don't educate themselves I am very happy that they don't vote.  I think it is interesting that many new Canadians, those who have immigrated here only recently have a better handle on our political system than many Canadians who were born here.  When you go to the polling station I think you should have to fill out a short questionnaire before you get your ballot.  This shouldn't be complicated.  I think when you go to the polling both you should know who the candidates are and the parties they represent.  I am wondering how many people would actually get that wrong.  It's kind of scary when you think about it.  I think we should have an "open-mind" and consider the options when we vote, but do the rest of the country a favour and educate yourself before you vote.

The Season Ends

Yesterday the bubble burst.  It was a great run, but unfortunately the Tar Heels season ended late yesterday afternoon.  It would have been great to have the season extended one more weekend; but it wasn't to be.  I went to work this morning and promptly folded my bracket neatly and placed it in the recycling bin. 

Some may wonder why a prairie boy from Manitoba might become such an ardent supporter of a school somewhere in the mid-atlantic states.  There are a few reasons...the strategy, the college hoop-la, and if you ever get a chance to see a major US college campus...they are really something to see.  I've been to Chapel Hill North Carolina and to Lawrence Kansas and both did not disappoint.  Both schools, KU and UNC, lost yesterday afternoon.  Wasn't a good day.  Anyway....as we get closer ot October 15th, my web browser will make more frequent stops to my favourite basketball websites as "this" season slowly fades from memory. 

Seasons like this past one are some of my favourites.  The championships are nice, but I think I best remember the seasons that didn't quite end so well.  Some of my favourite teams were marked by unproven freshmen that played beyond their years and were just fun to watch.  They would win big or lose big, but either way they were fun to watch.  Some of my favourites were the 99-00 Kansas, UNC 02-03, and UNC 05-06...these were some fun teams to watch.  No championships in those years, but the best was yet to come.  This seasons version of the Tar Heels had no seniors that played any significant minutes; starting two freshmen, two sophomores, and a junior who had never played a full season due to injury.  This team can all return next season...who knows if that will happen...but its interesting to think about.  This team was written off in early January after an ospicious start to the season in Puerto Rico, some mediocre games through December and an ugly loss to Georgia Tech in early January.  Things were not looking great...then the point guard issue got resolved and it was "game on."  (by the way...where is Larry Drew).  It's fun to watch a team come together and get better with every game; and this team got exponentially better from mid January to the end of the regular season.  The final regular season game against Dook was the best game they played all season...even considering how well the played in the last few weeks...that game...they beat up the Dookies and in the end isn't that what really matters...beating Dook.

Yes...i'm pouting today; did I not mention the reason for doing this blog is largely therapeutic.  Sports is a nice diversion from the day to day, but unfortunately the season does have to end.  So who will I cheer for next weekend?  I think it is interesting that either VCU or Butler will play for the title.  Would be nice to see Butler take it; after coming so close last year.

Battling # 2

For anyone who has kids or pets...you get to see your share of "Poop."  You just deal with it.  It is part of life...and that's that.  In our case, we have had to endure months and months of poop.  Our poor little boy...(without getting into a lot of detail) has had to deal with diarrhea.  This has been going on, off and on, since the transplant.  The one thing we have learned is that Doctors are absolutely fascinated with Poop.  For several months last summer we actually kept a poop diary.  So what do you write on a poop diary???  Good Question.  You learn really interesting ways to categorize and describe poop.  All factors must be considered.  Quantity, frequency, colour, consistency, texture...the list goes on.  After a while you begin to think you are going off the deep end.  I think the frustrating part is that the poor little boy who is the subject of this exposé of poop, is the one who has to suffer through this.  We have tried just about every different kind of diaper rash cream known to man, with marginal success.  When we were starting to get very concerned about the state of Russell's bum I sent a somewhat desperate e-mail to our Doctor with the Subject Line: "Russell has a Red Bum"  Apparently, that e-mail was distributed around the clinic, as the Doctors found this quite amusing.

So this is what this whole experience boils down too.  We have been at the cutting edge of medical technology with world renowned physicians, traveled thousands of miles and what does it all result in?  Me...running down the hall in excitement, with a diaper in my hand, to show my long suffering wife a semi solid BM.  Now picture that.  Can't buy entertainment like that.  Then there are the poor souls who have had to endure dinner at our house, as Susan and I discuss the "poop diary."  Doesn't everyone do this??

I do like to make a point; and I guess this is it.  Life is simple.  No matter how much we try to complicate things it always boils down to the simple things in life.  Our life is complicated, as most people's are, but I think we need the constant reminder to slow things down and deal with our issues one step at a time and to stop and enjoy the little things.  Even if that little thing is in your son's diaper.

Note:  How about the crushing defeat of Duke last night?  Life is good!  All we need is a Carolina win tonight and all would be well in the world!

A Good Cause

I got a call from the Lung Association the other night.  Nothing big, just a typical call from a vollunteer looking for other vollunteers to help canvas in the neighbourhood.  It wasn't a professional telemarketer, so I was a little more recepetive.  Unfortunately, I had to decline and I joked that lungs weren't our organ of choice...after all we are "heart people."  I'm sure the person on the phone thought I was a little "off" but it was the truth.

It's an interesting place that we are in.  There are so many good causes...how do you chose to support one over the other.  I think its really important for people to get involved and vollunteer, give financially, and support in any way that they can.  Unfortunately there are huge needs out there and it can make deciding how to give support a complex proposal.

I think that is one way in which our life has actually become simpler.  It is really clear to me what I need to do and what causes I should be supporting.  There are some very distinct opportunities I have been presented to me; an opportunity to get involved in a way that is a unique fit for us.  The interesting twist for me is that I have been able to combine some of my professional skills into some of the causes that I feel passionate about.  It is a real win-win. 

Today was a day in which I started on a new project.  I have become a mentor to an up and coming HR professional.  This is a formal relatonship setup by our professional association.  This should be a fantastic learning experience for me and I hope that I can provide some guidance to someone who is beginning their career.  This is not a charitable cause but it is something I feel is important and which I have a passion for.  The HR profession has been very good to me and I think it is right to give back.  The same way that I am working with the College of Registered Nurses or the Stollery Children's Hospital.  These are all organizations that I have a unique insight into and have unique experiences to share.  It makes such a big difference when you really believe in what you are doing.

Now that I have done a promo for vollunteerism; it's time to get back to watching basketball.  By the way...I picked Richmond to beat Vanderbilt...of 12 games so far...I have 11 correct picks....take that!!!

The Eye Surgery

Well...the one thing I have to say is that every procedure that Russell has is always a unique and different experience.  This whole process with the eye surgery was quite different than what we are used to.

Whenever we have anything done it is some how related to his heart transplant.  This was not the case with the issue with his eyes.  Not related to his transplant or any of his past cardiac issues.  So as a result, we weren't treated special...we were just another routine patient getting a day surgery.  After you get the "special" treatment for so long...being ordinary really sucks.

Our day started early...around 5:00 in the morning as we had to be at Winnipeg Children's Hospital for 6:00.  This gives the day ward a chance to do all of the prep-work that needs to be done.  We headed down to the operating room waiting area around 7:30 and after a few discussions with the Docs Russell was off to the OR around 8:00.  We weren't allowed into the operating room, which was totally new to us.  Even when Russell had his transplant we gowned up and took Russell right into the operating room and placed him on the operating table ourselves.  The last thing Russell would see  was us before the aenesthetic took over.  This was not our experience yesterday.  This was a little upsetting as Russell is very aware of what happens in hospitals and it would be nice to be able to comfort him before he went "out." 

The procedure was quick as we were talking to our Doctor around 10:30 or so and went to see Russell in recovery around 11:00.  We were told that this whole process would be quick.  We are so used to the Heart Caths that are an all-day adventure, we just assume we are going to be at the hospital all day.  Russell woke up fairly grouchy and stayed that way.  His eyes were shut and quite puffy...all normal part of the procedure.  We were told that he may not want to open his eyes for some time...as they would be quite irritated and scratchy.  Being blind did not really go over too well with Russell, or us for that matter.

After we got Russell settled, with some help of a narcotic, we were discharged and were on our way home.  We got home around 2:00 PM and spent the rest of the afternoon trying to keep Russell settled.  He was really irritable and there was no indication that he was at all interested in opening his eyes.  With a little help from Tylenol with codeine we got Russell to bed for the night.  Fortunately, he slept well all night.  In the morning, he was still not opening his eyes.  Through the morning he wanted to do more things and was much less irritable.  Finally, around lunch time he began opening his eyes and within a couple of hours he was running around like normal.  When I got home from work, other than his very red eyes, you would never have known anything had happenned.

Our first look at his eyes have given us some positive indications that his eyes are much straighter and he seems to be interested in stopping and looking at things...all very encouraging.  We have a follow-up appointment next week so we'll see what the Dr has to say about the results.  From our perspective...so far...so good.

This is hopefully the last procedure Russell has to endure for sometime.  There are a few appointments already set for April and May but we are feeling good that the nasty stuff is behind us.  Hopefully, we will have a nice quiet summer with an occasional visit for blood work and not too much else.

Russell's Team

I write this note this morning having heard some very bad news.  One of Russell's friends from Edmonton is back in hospital.  We were in the same room together with this little girl at Christmas time (2008) and became good friends with her family.  Russell was born on Aug 5/08 and this little girl was born Aug 8. 

She has had huge development issues that I cannot begin to describe.  We found out this morning that she was taken to hospital yesterday and has had to have emergency surgery.  She has a long road ahead of her.  This little one is as tough as they get...she has constantly defied the odds.  If anyone can pull this off ... she can.

We are also getting prepared for Russell's surgery on Tuesday.  This surgery will attempt to correct Russells eyes that tend to cross.  The surgery will take a little over an hour.  What the surgeion will do is cut the muscle in the eye and then re-attach the muscle in a new location to straighten the eyes.  Measurements have been taken of his eyes to determine where to re-attach the muscle.  Russell is far-sighted and wears glasses...this does not get corrected, in this surgery, and he will still need glasses.  The surgery does accompish two things.  Cosmetically his eyes should look straight, more importantly with both eyes being straight it should give him proper binocular vision.  In other words...having both eyes being able to focus on the same thing, which does not happen now because one eye or the other will wander.  The other thing that needs to happen is to train Russell's brain to coordinate both eyes after the surgery.  The idea is that Russell's brain should like this new vision and will attempt to keep both eyes aligned.  So it is a physical correction of the eye but for permanent effect the brain does need to take over and control the muscles around the eyes. 

Tuesday will be a long day at the hospital...we'll be in early...around 7:00 AM and I don't expect to leave until 7:00 PM.  We were told that Russell should be close to full speed the next day and may not even need Tylenol.  They say he should resume normal activity by the second day. 

We interrupt this program

The one nice thing about having your own blog is that you can be somewhat self-indulgent....

With March comes March Madness.  I received an e-mail from CBS Sports reminding me to get ready for our annual NCAA bracket tournament.  Anyone, interested can drop me a note and I'll be happy to send you an invite.  We have only one rule.  Anyone picking Dook to win, will be penalized 500 points and be subject to ridicule and shame.   By the way...my mother-in-law won our pool last year.  You don't need to be a basketball genius to play.  Hmmm... maybe that didn't come out right.

The next few weeks on this blog may have a bit of a basketball overtone as this weekend starts with the ACC Tournament and then for the next month we eat, breathe, and sleep basketball during the NCAA Tournament.  The first weekend is always the best.  To give you an idea, this year the TV coverage will be much improved as the first two rounds will be covered by 5 channels.  I feel like hugging my satellite dish. 

Housekeeping

Just a few quick notes:

We got Russell's weekly bloodwork results...his results are borderline awesome.  It looks like this week is going to be "hospital free" for the little boy!!!!   YAY!  Don't have to repeat bloodwork for two weeks!!!
Unfortunately the boy has his eye surgery on Tuesday, so we will be back at Children's next week.  On the bright side...the surgery has gotten me out of a trip to Edmonton for meetings.  Thank You Russell!

A question:  Is it self-serving to teach your kids to memorize Exodus 20:12 ??  We have been having a bit of a power struggle with Nicole, as she feels being a big sister graduates her to parent status where she thinks she can make her own rules.  Anyway...we'll see how that goes.  How can you go wrong with good material.

Still VERY Busy

Well it's Friday...glad to have the week over.  It has been another busy week.  We are fortunate that we have been maintaining our one trip to the hospital/week average.  Since mid January, we have had two hospital stays and about a dozen more medical appointments.  We are hoping things have settled a bit.  One trip a week is still a bit much, so we are hoping that bloodwork results have stabilized so that we can start stretching it out for a couple of weeks.  Before Christmas, we were going for blood tests approx every two weeks and that is fairly manageable.  Add in all of life's other activities and it doesn't leave a lot of spare time.

In the last couple of weeks, my schedule has also been busy.  I spent a few days in Ottawa, for work, and last Monday I had a meeting with the College of Registered Nurses of Manitoba (CRNM).  I sit on the Education Committee as a public representative.  It is a fascinating experience, and I am gaining some insight into some of the inner workings of the nursing profession.  It is really enjoyable.  It sounds like my work schedule is going to pick up a bit to as I may be doing a few trips to Edmonton, Calgary, and Ottawa.  Hopefully I can keep them to short overnight stays.

March 15 is our date for Russell's eye surgery.  For those who don't know, Russell has Strabismus, which is simply crossing or turning of the eye.  Russell is far sighted and about a year ago we noticed his eyes starting to cross.  We are told this has nothing to do with any of his "heart" issues and is quite common.  The surgery he will get to correct this is a day procedure.  Not looking forward to this...and it makes you wonder "what next" ????  However, we are looking forward to the results.  I remember what he looked like before he encountered this issue.  He had his Mom's dark dark eyes and they stared at you like little laser beams.  Looking forward to that again.  Hope all goes well and that it is successful.

Another big event coming up for our family is registration for school for Nicole.  It is so unreal that this has come up so fast.  Our little girl is getting big, and its happenning way too fast.

The one nice thing about having such a busy schedule is that the winter has flown by fairly quickly.  In a few weeks we'll start seeing some warmer weather, which will be a welcome change.  Yes...then all the spring clean-up and lawn mowing season begins.  Yes...always something that needs to be taken care of.

Being Positive

When we were maintaining our care page; Susan and I often debated how much detail we wanted to include with our updates.  It was always a challenge to balance being positive with being realistic.  The purpose of the care page was to keep people informed about Russell's or Susan's health situation for so many people who were such a long distance away.  To be very honest, the care page was quite sanitized.  Some of the negative details or even graphic pictures we steered away from as we felt it didn't do anyone any good.  We were battling our own battle of trying to stay positive in a not so happy situation.

I remember when we were interviewed on the radio in Edmonton.  It was a fundraising radiothon to raise money for the Stollery.  I remember how upbeat we were during that interview.  Not sure if that was the best thing for raising money, as nothing beats a real "tear jerker" for whipping up sympathy and of course the cheque book.  I think we felt so thankful and relieved that we were doing "OK."  Was Russell still in very serious condition at that time...yes...of course he was.  Our whole hospital experience changed us and taught us a lot of very hard lessons.  We look at life so differently now.

Many people ask us how we can be so positive.  I think that is an interesting question; as I don't think Susan or I are naturally positive people.  If you were to ask us about our whole experience I could tell you about the many amazing people we have been so fortunate to meet.  These include some incredible medical professionals, families of kids with life threatening illnesses, and numerous old friends who, because of our situation, we have been re-connected with.  We have also had many opportunities to speak in public about our story and have become involved with several organizations.  All of these opportunities have been afforded  to us as a result of our experiences.  On the other hand, we have and will have our moments when we fall apart.  In particular, the past month and a half have been difficult; and it frustrates us.  I don't want to convey the impression that everything is under control.  In many ways they are not.  These are the peaks and valleys that are likely to continue as the journey we have embarked on is life-long.  Everything is about balance and focussing on what's important.  In many ways, our life has become a lot simpler.

Before Hospital World - Part II

When I left off.  Nicole had just been born and the legal wheels were in motion to begin the adoption process.  This was hardly the end of the story.  There are several legal hoops to jump through before the adoption happens.  In addition, there are several emotional hurdles to overcome as well.

Nicole's adoption was what is known as an "open" adoption.  "Open" meaning that the birth mom and adoptive parents all know each other and can have the ability to maitain contact.  The choice of where the adoptive child goes and how the adoptive family is chosen is a matching process performed by the Provincial Adoption Registrar who creates a "short list" of perspective families.  These profiles are then given to the birth parent/s and they select based on their own personal criteria.  We as perspective adoptive parents have no part in the process other than providing input for the profile such as pictures and an introductory letter.    This also makes these adoptions very unique and personal.  What we experienced could be very different from someone else's adoption story.

After Nicole was born; this "lack of control" could not have been more evident.  We were on cloud nine but we could not see her yet.  To be respectful and with the social workers advice we wanted to wait until the birth mom invited us to see the new baby girl, who at this point did not have a name.  Perhaps the birth mom did not want to see us, she could have second thoughts, there were many possibilities as to how this would play out.  I think this is where the social workers did such a great job.  They kept talking to birth-mom and kept us informed about what was going on.  They kept everyone on an even keel during a very emotional time.  The first news we received was the basic height and weight information and that the baby was perfectly healthy.  Mom, however, had some post delivery complications which put everyone on edge.  From our understanding the complications were not minor in nature.  This just added to the stress.  So the night our daughter was born we went ...shopping; not because we needed to but because we were going stir crazy sitting at home and "waiting."

Thursday slipped away and then it was Friday.  Still; no news.  Sometime on Friday we were called by our social worker to let us know we had been summonned to the hospital.  We agreed to meet on Saturday morning.  We were going to see birth-mom first and then the "BIG" introduction.  We were also informed that birth mom would be meeting with her lawyer on Saturday afternoon for her to declare her intent to adopt.  This is a critical part of the legal process.  This would allow us to take our newborn daughter home from the hospital.  So...Saturday was the BIG day.

With great anticipation and mustering every bit of parental confidence we could we headed to the hospital on Saturday morning.  We met birth mom and exchanged some small talk.  Keep in mind that we had only met her once before and only for about 45 minutes.  We were basically strangers.  Our birth-mom is an extremely easy going person and although I wouldn't describe her as chatty but nonetheless easy to talk too.  Then the big moment.  Our little girl was wheeled in from the nursery.  You would think that moment would be vivid in our memories as "the moment" but it is not.  I think we were so concerned about etiquette and trying to be respectful I think we lost ourselves for a bit.  Our girl was truly perfect.  The day before we had found out that our girl did have a name and that it was Ashley.  This was chosen by her birth mom for the registration of live birth.  Our initial reaction was that we liked the name and intended on keeping it.  We did have the choice of choosing our own name, but we were ok with Ashley.  Baby names were not high on the priority list at this point in time.  Our visit on Saturday morning went well.  After a few hours, and knowing that the lawyer was coming in the afternoon we made arrangement to come back in the evening.

When we came back, that night, we found that the lawyer had come and gone and that the papers that needed to be signed; were signed.  We were very pleased to hear that the lawyer spent some time with our birth-mom and they even went on a walk together.  It sounded like they made a good connection and things were going very well. 

That night we visited some more and gave baby Ashley her first bath.  We found out that the plan was for birth mom and baby to be discharged the next morning, Sunday.  We would be taking "our" baby to "our" home the next day.  Needless to say we were a little anxious and a whole lot excited.  Could it really be this easy? 

When we went home that night and made final preparation for the next day's homecoming.  We had a bit of a "moment" as we were trying to get used to the idea of having baby Ashley around.  I remember talking to Susan and referring to "Ashley" and Susan said "who?"  It was probably at that point that we figured that we needed our own name for her.  We liked "Ashley" but it just didn't have that "fit like a glove" feeling to it.  It was that night, quite by accident, that the name "Nicole" came up.  OK...it's corny...but the name Nicole actually came about while we were watching a movie...the Interpreter...with Nicole Kidman.  Yes...our daughter is named after an Australian actress.

Sunday morning came and we buckled the baby seat into the car and headed to St Boniface hospital to fill it.  We were kept fairly busy, at the hospital, doing administrative stuff and getting last minute instructions.  Our social workers where their to help with the transition.  The only request our birth-mom made the whole time we were in the hospital was that she wanted to spend time alone with baby Ashley, say goodbye, and then she would leave.  I remember it very well.  Our birth-mom walked out of the hospital room with a back pack over her should and left...without a baby.  Ashley was now ours.  This was "our" moment.  This was when this all became real to us.  This was our birth story, at this moment.  We spent a bit of time gathering up some items and said goodbye to our social workers and strapped our little girl into her car seat.  I remember what our social worker said when we left..."have a good life."  That really sticks out in my mind as although it was a very trivial statement it meant a whole lot more.  Although we still had some legal process to go through...we were done.  Our baby was coming home.  At noon on Sunday, with church bells ringing, we walked out of St Boniface hospital with our daughter, Nicole.  We took pictures outside the hospital, a ritual we repeated two years later.

Our 21 day waiting period came and went.  At any point in the first 21 days, the birth-mom can change her mind.  This is probably every adoptive parents most feared time but with us it came and went with no issue.  In August of 2006, the final adoption was legal.  A new registration of live birth was filed with the name of Nicole Ashley Anne Lepp being born to Donald and Susan Lepp on April 27th, 2006.  That single piece of paper hardly tells the whole story.

Before Hospital World

In the past 2 1/2 years our lives has been dominated by "hospital world."  It's hard to remember what our life was like before Russell came on the scene.  When Susan found out that she was pregnant with Russell, we were still new parents as Nicole was only a year and a half old.  Many things had already changed in our lives with the arrival of our little girl.

Many people think that Russell is a miracle baby but in reality he is our second miracle, Nicole was definitely the first.  The chances of us having kids was very unlikely and we had opted to look at adoption as a possible option.  In February of 2006, my Dad was dying of cancer and Susan's Mom was waging her own battle with cancer.  We discussed with our social worker at that time, the possiblity of coming off of the adoption list temporarily to let our lives settle down a bit.  We talked about it and decided not to de-list.  If an opportunity came up we would seize that opportunity.  Besides, we had no real control over the situation, the opportunity to adopt could happen in a week, a year, or never.  We are so happy we made that decision as Nicole was already on the way.  I remember so vividly the day we got "the call."  It was the Tuesday following Easter.  I got the call from our social worker that there was a potential baby available and were we interested??  It seems a little bizarre when we think back...that someone was phoning us to offer us a human being. 

When we got the call...we know this was far from being a "done deal." In fact we thought chances were that this wouldn't happen at all.  After all it was the birth mom's choice as to where her baby would go and we knew she was looking at a couple of other potential families.  Having never been through this before, it seemed a little unbelievable and that it may never happen.  I don't remember the exact order of events but that evening when Susan and I both had a chance to absorb the situation and read the adoption profile we had a follow-up discussion with our social worker and asked her a few more details.  We found out that the baby was due in about a week and that the birth-mom wanted to meet us.  A meeting was setup for that Friday.  I think we were remarkably calm during this time...as I think we really didn't understand the gravity of the situation...it was just too unreal. 

Friday morning came (the day of the meeting).  On the way to the appointment, I commented to Susan that we are going to meet, have a nice chat, and in all likelihood this wouldn't happen.  The birth-mom will likely choose someone else...but this was a good experience to go through, so we would be better mentally prepared for the future.  I laugh when I think about how unprepared we were for that meeting.  We really didn't have a clue.  One of the reasons I love our Social Workers from CFS is that they would never put a family through this process unless they were pretty sure it was going to work.  They look carefully at the birth-mom and the family and put all of their eggs in one basket.  They want this to work.  We didn't realize it at the time but they were pretty much sure this was going to happen before we met.  Again, there are no guarantees, but they definitely had a game plan.  After a 45 minute, somewhat awkward visit.  We found ourselves making appointments with lawyers and making arrangements for temporary guardianship in the event the baby were born over the weekend.  Papers had to be filed that day if we wanted to take the baby home, as this was a Friday.  Susan and I were absolutely stunned!!  We had to take our social worker aside and we very sheepishly ask "is this happenning"??????  She must have been laughing on the inside, but she very calmly said..."Yes...it is!"

We were dazed!  In a few minutes we were driving on our way to our lawyer's office to begin the legal process of adopting our, yet to be born, baby. 

We made a few phone calls to family to let them know what was happenning and then we began thinking about all of the things we needed.  We didn't have a clue.  The first thing that was mentioned to us was that we needed a car seat to take our new baby home.  There is a baby store a block from where Susan works so we thought...hey why don't we take care of this right now.  We wandered into the store, and began looking around.  We didn't have a clue what we were doing or what we were looking for.  After some time a store clerk offered some assistance.  We must have seemed like total morons as we didn't know what to ask and had no idea of what we were looking for.  I remember the clerk asking..."So when is the baby due?" and we said "next week" to which the clerk responded with a bit of a puzzled look as she glanced at Susan's not pregnant belly.  We were so overwhelmed by all of what had happenned that morning we were in no frame of mind to be buying a car seat, so we graciously thanked the clerk for their help and exited the store.  The car seat purchase would happen another day.

The weekend passed with no news.  We exchanged a few e-mails with our lawyer and our social worker as we had several questions about the process.  We had several hurdles to overcome before this adoption would happen.  Yes, we had a verbal committment, but we still had legal hurdles and the dreaded 21 day waiting period.  By the time Monday rolled around, we were already well into the process of getting..."baby supplies."  We went back to work and attempted to put all of this out of our minds as we "waited."  Monday, Tuesday,  then Wednesday.  No word and no news.  The pandemonium of the previous Friday had now transformed into boredom.  When is this baby going to be born, would it be healthy, would it be a boy or a girl?  Imagine all of the questions, fear, joy etc of 9 months of pregnancy packed into a week. 

On Thursday afternoon,  while picking up some drawings for work, I stopped for gas.  While I was filling up...my cell phone rang.  It was our social worker, and the news we were waiting for was finally here.  "You have a perfectly healthy little girl."  Wow!  Never in a million years did I imagine that I would find out I was a father at a Coop gas station and that I would have to phone the baby's new mother to let her know.  I quickly detoured on my way back to work and stopped by to see Susan.  Susan met me outside...we got in my truck and had a "moment."  We cried (I NEVER cry) and I don't remember who said it but I know we were both thinking it..."What did we just get ourselves into?"   

Opportunities

After last weeks detour into "Hospital World" we have had Sunday to rest.  We attended the church of the "Sleepy Pillow."  Then Monday came and it was back at it...back to work for both Susan and I.  I did take Russell for blood work Monday morning so I was a little late for week.  My goal for the week was only one trip to the hospital this week.  Looks like we might actually achieve that goal.  Susan works part-time so she worked Mon & Tues and has the rest of the week off.  Next week we get back to the insanity, when Russell has an appointment on Tuesday for a 24 hr Holter monitor and blood work again.  I am leaving for Ottawa on the 23rd for the balance of the week.   So we are still in "busy" mode.

On Feb 28th I have my first meeting with the College of Registered Nurses of Manitoba.  I am really looking forward to this.  I have been appointed to the Education Committee as a public representative.  I am sure I will learn lots and it is an opportunity to give back to the profession that has given us so much.  I am really enjoying the opportunities that some of our experiences with Russell has granted us.  I strongly believe that both Susan and I have been given opportunities to share our experiences and to attempt to make a positive impact on the medical system or help amilies who may be going through similar situation as us. 

When I have spoken about our experiences with the medical system i have tried to be positive.  We have encountered some of the most amazing people, who are extremely skilled at what they do.  What I have not emphasized is some of the negative experiences and frustrations we have dealt with.  Part of the reason we have gotten involved; is that we have chosen to help try to solve some of the problems...and there are many.  We have been reminded in this past month during our two hospital stays just how much things need to improve.  I am very proud of some of the progress we have made in making some in-roads into the medical system and I have been very surprised how much support we have from medical practitioners.  I am hoping to share a few things in the next couple of months about some of the projects I have been working on and hope they materialize.  For now...there is still a lot of work that needs to be done.

It's not all about me!

In light of all of the events of the last week and the last two years you would think it would be easy to be self-absorbed in what is going on in your own life and I think most people would understand.  The one thing I have to say is that we have been constantly reminded that there are lots of people out there who have it tougher than we do and in spite of all of the negativity there are lots of good things happenning as well. 

Just a few minutes ago I found out that my cousin had passed after a lengthy battle with cancer and also another family friend had passed this week also having battling an amazing battle with cancer.  Yes...we aren't the only ones who have challenges in our life.  Both of these people were very supportive of our family while we were in Edmonton with many words of encouragement.

Probably about the 100th time i've been reminded to be thankful. 

A Busy Week!

It has been an eventful week.  Monday started with Russell's Heart Cath which went amazingly well.  I have to stop and think about that for a bit, to remind myself how big a deal the Cath is.  They send a catheter into Russell's neck and then basically go exploring in Russell's heart.  They measure pressure, and take a biopsy to check for rejection,  and do a whole bunch of things to stress the heart to see how it is performing.  Although, it is a day procedure it is not minor in any other way.  Everything went well during the Cath.  While Russell is "out" they take blood to do tests...it is just easier.  As a result, we were told that his Potassium levels were high.  We have been through this before.  A med was prescribed to take the Potassium level down...been there...done that.  No big deal.  Well...nothing in our life is ever simple.  The med is this brown slop that we have to give insane amounts to Russell.  40 ml...every 6 hours.  Keep in mind...that no other med we give Russell is more than 1 ml.  Russell is awesome at taking his meds...but when you have to give him this volume he digs in his heels and says "no way."  Never mind the fact that getting the med from the pharmacy was a bit of an adventure in and of itself.  I went to a pharmacy, close to work, but got a powder that we had to mix with water.  This didn't seem right to me as we had been given a liquid before.  I did some checking and the powder was correct.  The problem with the powder is that it doesn't mix with water at all...it separates in about 3 seconds.  It is the equivalent of trying to drink a glass of water with sand in it.  Try constantly trying to shake a syringe while trying to pin your son down...holding his arms...and trying to pry his mouth open.  On one session I got head-butted twice.  As we had used this med before...i called our "dealer"  (our regular pharmacist).  To ask about what we did last time...he told me that we used a liquid, which he had in stock.  So off I went to the pharmacy...to get a new batch of this nasty brown liquid.  Although using the liquid was better (no mixing...no separating of the liquid) it was still just as much of a wrestling match to get Russell to take it.  Giving the med was so awful that we decieded to skip some doses for our own sanity.

Thursday morning...I grit my teeth and said..."your getting your meds this morning."  After a 20 minute session the med was in.  Off to work....
At about 11:00, Thursday morning...I got a call from our babysitter.  She told me that Russell was just not himself.  He was drinking but not eating and had no energy.  She had changed about 4 diapers with diarrhea.  Normally, I would have just thought he was sick...but in conjunction with the high potassium I thought we should get him in to the lab for bloodwork.  We were scheduled for the next day anyway...so i thought we would just go in a day early.  The blood tests would show if there was anything to be concerned about.  So I left work, and picked up Russell.  I have to agree with our babysitter...he wasn't himself.  He flopped into the car seat when I put him in the car.  He started to nod off to sleep right away, which concerned me a little.  High potassium levels can cause arrythmia...and he wasn't acting "tired" sleepy...he was acting "things aren't good" sleepy.  I have to confess I left my hand on his leg as i drove and jerked it from time to time to make sure he was ok.  Some not very pleasant memories were coming back to me.  He was OK when we got to the hospital.  We were just waiting for the elevator at the Sherbrooke St Parkade when he launched everything he had eaten that morning all over the two of us and all over the floor.  This wasn't a trip to the clinic lab anymore it was a trip to Children's Emerg. 

I went to the clinic as they were waiting for us.  Catherine (one of our techs) was there and she helped clean Russell up a bit.  We collected ourselves for a moment and then headed off to emergency.  The emerg was a gong show.  I walked in and the waiting room was packed.  There were probably about 60 people in the waiting room (Place appropriate four letter adjective here quickly followed by a prayer for forgiveness and patience.)  The advantage of being "special" is that we don't wait in waiting rooms...especially ER waiting rooms.  I gave Lea from Variety (our Heart Clnic) a quick call to let her know we were there and to call for backup in case anyone hassled us about getting into a treatment room ahead of the 60 others waiting to get in.  Lea made the quick jaunt from across the street and looked at Russell and immediately said how "dry" he looked.  It was obvious he was really dehydrated.  Without any real issues we were quickly escorted to Room 10 in the Emergency Room.

I can be very critical of some of the medical people we encounter who don't know a lot about Russell's medical history...but I need to learn to be more patient.  Everyone tries very hard and they do try to their best for Russell.  The problem is Russell is very complex and therefore the Doctors and nurses become VERY careful.  Everything slows down and starts moving at a "snails" pace.  I assumed that they would start an IV, to re-hydrate the boy, and as soon as that IV went in I knew we weren't going anywhere soon.  After a few hours of fluid through the IV he already started to perk up.  At about 6:00 that evening...we started feeding him Cheerios and Juice.  Russell was already starting to entertain the nurses and be a regular "ham".  This is when I get the most frustrated.  You have a kid who is feeling fine and is acting like his old self but no one is going to let you go anywhere.  From here it becomes a negotiation to have us leave the hospital.  We received the news that they wanted to admit him to monitor his potassium level and make sure he didn't have the flu.  Fantastic...we weren't leaving anytime soon.  This is when frustration turns to anger.  There is nothing that they will do in the hospital that we can't do at home.  Pull the IV and let's go already.  He is drinking and eating... what more do you want.  The only thing that changed in the past 48 hours was that we had introduced this nasty brown slop med...which obviously has given him diarrhoea...which has caused him to be dehydrated.  Let's stop the med and leave the poor kid alone.  Ahhh yes...but we must be careful.  So this is how it went for the next 24 hours until we negotiated a day pass to go home on Friday evening.  We returned Saturday morning for bloodwork and waited for the results before we finally were formally discharged. 

So that was our week...how was yours?