Extreme highs and Extreme lows....

Where to start the past 24 hours have been filled with alot of emotion.  Let's start with the extreme low...it doesn't have to do with Brody but one of his cardiac nurses, Jan Rooks.  It was published last night that she is one of r he 4 Canadians that died in the avalanche in the Nepal avalanche.  I am in to a shock as we were just talking to her last month àbout this trip and she was so excited.  She was our rock our first trip out to BC when we had Brody and continued to show nothing but support and passion in his follow up surgeries.   She was a one of a kind individual with THE biggest heart you could ever find.  She is going to be sadly missed and I am glad we got to see her one last time as she always brought some brightness during times that were no always so bright.   Rest in peace Jan...at least you were doing something you loved.

On a better note we were in Saskatoon for a check up with Brody yesterday.   He is doing well.  Maintaining weight and is 100 cm tall.  He is such a trooper for all the tests even though he wants nothing to do with them.  He is still in junctional rhythm hut Dr. K isn't concerned as his blood pressure and heart rate are great and his oxygen is up around98%.  We have to go back in about a on the then will probably have a 24 hour Holter pit on if his heart rhythm doesn't come back to normal.

His scars are healing wonderful...I grabbed a picture when he was pretending to be Scott Voss for.  Here Comes to Boom (his favorite movie).  Have a great weekend from our family to yours and please remember to cherish everyday as you don't know what tomorrow may bring.

3 weeks....and things keep getting better (other than sleep that is)

Well it has been three weeks and he keeps getting better every day.   We went for a follow up appointment in Regina yesterday and  everything is still the same...although they are seeing more p waves  but it is still firing at the same time as his q waves.  They should be going p then q.  They seem very hopeful will fid itself.

His sleeping has gotten worse over the past week (if you can believe it).  He is sleeping like a newborn...Up every 3 to 4 hours.  Sometimes with nightmares from what happened other times with chest pains as he was sleeping on his chest for three hours.  Tonight when I was putting him to bed (and it is now 10 pm and he still isn't sleeping) he grabbed my hand and put it over his scar and said Mom my owy and it hurts.   Hold it.  My heart broke...I feel so useless as there isn't anything I can do to help other than tell him I love him.  This is by far the worst feeling in the world. ..complete helplessness.

Finally home...and to a great surprise

We had a good check up this morning with Brody.   If it wasn't for his irregular heart beat he would have been the perfect fontan.   We are still hoping and praying that his heart gets back to normal but only time will tell. I really don't feel.like going back to Vancouver.

Brody and I had an awful time getting home (Wade was lucky and got on the direct flight).  We left Vancouver fine and on time and even. Loaded the plane in Calgary on time. ..then we were asked to get off due to electrical issues.  3 hours later we left and landed at 10 pm...Brody is exhausted.

We got home and to my surprise Caine was still up...I was so happy to see his smiling face.  The I walked inside....

WE HAVE THE BEST FRIENDS EVER!!!!!!  Not only did they decorate but loaded our freezer with food.   Paula and Jay, Steph, Debbie and Brad, Dana, Kathy and Shawn, Linda and Joe, Phil and Scarlett Thank you so much means to world to us.  We couldn't ask for better friends.   We can't wait to see you all soon too I missed you guys!!!!!!!

Sorry I forgot to post last night...

Things are still going great.  We ventured out today to Metrorown and then meet Brody's new best friend, Jerry for supper.  He has really taken to Jerry.  He is what we refer to as the BC Kenny.  We ate currently waiting at our appointment now to talk to doctors so will update tonight as we are headed out on a flight at 2 pm.

The Gong show continues.....

Brody is just fine.  We didn't get to go to our appointment today as our doctor, Dr. Gandhi, was part of a bicycle accident in the weekend so our appointment has been rescheduled to first thing Wednesday morning.  Man what else could go wrong to keep us here when all we want to do is go home.   So that being said we hung out at Ronald McDonald house while Brody took another 3 hour nap.  Been long days but what are you gonna do

Just hanging waiting for our appointment tomorrow

We haven't been up to much today.  We headed to Stanley Park for a bit this morning and hung out this afternoon watching the Rider game (can't believe they pulled off the win), visited with Aunt Denise, Chris and his fiancé Anna (really liked her good job Chris), and had a great steak supper here at Ronald McDonald house with Jerry and Andrea. Overall just ready to get home.   Here is hoping for great news tomorrow and to get packed up and ready to come home on Tuesday.   Stay tuned. .....

Missing my big guy

Today our big guy headed back to Regina with my parents.  It was so sad but he was so brave.  He has been such a trooper during this whole time something that no six year old should ever have to go through.  Wade and I can't wait to give him some one on one time and take a small over night trip with him very soon.

The rest of the day was a three hour nap, supper at Old Spaghetti Factory and a visit with Brody's new favorite friend Jerry and his wife Andrea.

Overall things are going well.  He has a tantrum every time medicine time comes and won't let us change his shirt. .but other than that he is doing well.

Wishing I was home with Caine.