Oh my, summer is going by so fast...

Hi Guys,
Its been quite a while since I posted so here come some things we have been doing......

Some fun goofing around on Canada Day waiting for 54-40 to start their concert Summer is so sadly just not the same. Everything we do we are missing Sebastian as he enjoyed summer activities so much.
Visiting the goats in Coombs, on the IslandWe went to visit friends in Kelowna and enjoyed our time with friends, beaches and water in general and just the time away.


Some pool Volleyball watching the sun go down in KelownaEnjoying some time on the beach
They went for a long bike ride around ....
Some slipping and sliding on a hot and sunny day
Isabelle's little dance class performed their dances the the showboat stage in Kitsilino, they did great and had so much fun
before their performance we went swimming at the pool in Kits, they had such a fun dayShe Loves to paint and had to do it on the wall just like daddy did!!

This was a busy weekend of lasts for the season

Bentley
He had his last game of lacrosse Saturday morning, we are not sad that the season is now over for another year!
Sadly though, he had his last spring hockey game, he wishes that this would continue all summer till regular season! He and his team worked very hard all season and won 11 out of 12 games, way to go!! He is also finishing up his last days of school for the summer.

Isabelle
she is finishing up her ballet. She had her dress rehearsal Sunday with the final recital next Saturday and Sunday.
There will be no more driving here and there for practices until mid August!

We went to the lake last weekend. Bentley asked Isabelle if she would like to go for a ride with him in the kayak she wanted too. The kids enjoyed the day of swimming and playing -- we had a difficult time getting them out of the water!They love the water

This week marks 22 weeks since Sebastian passed away and he is always in our thoughts and hearts. Isabelle insists on buying a helium balloon whenever she sees them at a store - she lets go of them and watches them as they disappear into the sky and talks about how happy Sebastian is as he catches them - these little things make her so happy. All in all they seem to be doing quite well considering what they went thru for all their lives.

As time goes by...

It was recently brought to my attention that this was in dire need of an update...
Sixteen and a half weeks have gone by and though Sebastian is always in our thoughts and heart, we are keeping busy with Bentley and Isabelle's activities and work. We keep fresh flowers on the shelf with his hand molds and miss him terribly.

Bentley is in a Lacrosse tournament this long weekend, today he was unanimously voted "MVP" - way to go!! He played a spectacular game,
Two hours after his lacrosse game he was at his hockey game and again he played fantastic. He was on fire today!! We'll have to see if he is still on fire when we arrive at his first of two lacrosse games at 7am tomorrow!!!!!
After the game!!! just goofing around waiting for the coaches to unlock the dressing room!!!

Isabelle is sure growing up before our eyes!! She is back in her ballet and tap classes. They are preparing for their recital later in June! She has gotten quite an attitude recently and become quite difficult.
Over the past few weeks she has been home from daycare/pre-school because we heard that a child had lice and we REALLY do not want them. No one else has had them but now she is afraid to go back she doesn't want the bugs!!! It has been working out ok, i have been working many mornings and Stel afternoons so either i get home in time or he drops her off at work with me(which she loves!!).
Isabelle loves the swings and the higher the better!!!
She really liked watching all the baby goslings and this parent didn't mind as long as she kept her distance!! The day after she and Stel biked back to see them and she thought it was so fun as she watched them cross the road and cause a bit of a traffic issue!!

I have been having a few health issues and hoping that its under control now, Stel has been struggling with a bad cold but we just keep on....
Well thats some of what's being going on in our house...

Happy Birthday Sebastian

Today is Sebastian's Birthday, he would be 12 years old! It has been 11 weeks 1 day and 23 hours since he so bravely slipped away and it is so difficult to imagine the rest of our lives without Sebastian.

Added later in the afternoon.... Its been a very difficult day...
We went and released balloons for Sebastian. Little notes were written and attached to the balloons and we all watched till they were no longer able to be seen. Tamie, I wonder, Isabelle's ballons look like Mickey Mouse and the colors are very american, wonder if that means anything...

It is a tough day indeed

It's been 1 month, or 4 weeks, or 28 days, or 672 hours or 40,320 minutes since Sebastian passed away. I can't believe it's been a month. Our home is very empty and a big part of all of us is missing.

Bentley had a tournament in Kelowna so I took the kids last wednesday morning and then Stel came by bus on the Saturday afternoon and we all came home Sunday evening. They had some good games and some fun. We stayed at a friends BandB which helped me keep my sanity.

Stel is on his 3rd week of afternoon shift and I am finding it tough as well as the kids do not get to see him almost at all.

Sebastian's Service Information

Sebastian's Memorial Service has been planned...

Saturday January 31st at 1pm.
It will be held at Calvary Baptist Church in Coquitlam with some refreshments downstairs after the service.
The church is at: 1636 Regan Ave --

We would like to thank everyone for their support.

As most of you have already heard....Sebastian passed away peacefully in our arms Wednesday January 21st just before noon.

a bit of an update

Sebastian continues to fight a very valiant fight.
He has had very tough days, there were times we were told he had only hours left but somehow has kept on fighting.
Sebastian is very weak and now in his last days we are continuing to make sure he is as comfortable as possible.

For Christmas morning we brought Sebastian down and made him a comfy recliner so we were all able to be together.
Canuck Place was technically closed during christmas except for our family so it was very quiet and Isabelle and Bentley were able to do whatever they wanted. It was on Christmas day that I knew Sebastian would not be able to come home again. His body is slowing down. His feeds have been slowed and many of his medications have been stopped, but new medications for his comfort and care have been added thru his central line.
She didn't last long on the ice!!! Bentley has been doing some skating at the new olympic oval built for speed skating in richmond.

It has been brought to my attention by some that I have been very behind in my updates. I can't seem to sleep tonight so here's what i've got.

It is the Christmas Season, with less than 2 weeks before the Jolly man in red should arrive I am not feeling very festive or merry, but think I should actually pick up some presents for the kids...

Sebastian was again admitted into Canuck Place Hospice for a deterioration in his breathing. Since arriving last weekend most days he has changed a bit and gotten worse. He is very well medicated, with both morphine and fentanyl and is, in the most part comfortable. I had not really thought, or possibly tried not to think about what was really going on till I was talking to one of our favorite nurses yesterday afternoon and she said that our stay has been extended till?? Then in the evening with Sebastian breathing and on his 6 litres of oxygen his sat's hovering in the 50's his night nurse telling me what a great life he has had and how tired and grey he is looking. He has been going downhill for some time now and his body is fighting so hard we are very unsure what this festive holiday season will bring. I do know, though, that Stel has taken the next couple days off work to spend some more time.

Today, we had had a plan to try and get the Kids pictures taken. Luckily it was a sunny chilly day and after Bentley finished his second game we headed out to the park. Sebastian has not been awake in the past couple weeks and hasn't been out in longer than that, but this afternoon he was awake for a couple hours.
The pictures are not great, taken from my cell He really seemed happy to be outside in the fresh air.I am really not sure what she was thinking, but think its pretty cute anyways!!If you really know Bentley you will also likely know that minutes later he was waist deep sitting in the water!

Our Baby has turned 3, wow how time flies! We just can't believe our little baby is so grown up. Isabelle had her little Birthday party the saturday before her birthday with some of her little friends. They had some fun at Build A Bear then a bit of lunch and cake. This cake was made at a local grocery store and was fantastic.We got to see our little neice and a couple of friends we don't see often which was really nice and also a few of Isabelle's little friends.She LOVED her new Dolly!!!!She wouldn't let us take it out of the box until she was alone, apparently she didn't want to share it or let anyone touch! She takes her baby everywhere she goes and even shares her favorite blanket with her.After Isabelle's party we went into Canuck Place for Sebastian for a week. They are working hard at trying to keep him comfortable and checking/seeing if there is anything that they can or should be doing for him at this time. His body is fighting but his underlying metabolic disorder is fighting harder and he is slowly going downhill. There are many days/weeks he doesn't really wake much and other times he is awake but just doesn't really focus very much. At times we are not sure he knows us and then other times where he is very aware. It is a very difficult process to watch. Canuck Place has decided he is going to be admitted regularly to monitor him and apparently help with upcoming decisions.
Isabelle was in Canuck Place for her actual Birthday so she had a really pretty cake made for her with strawberry shortcake on it as well as a strawberry shortcake umbrella and little bag. She was so excited and LOVES strawberry shortcake.
On Halloween day Isabelle wore her Ballet outfit around Canuck Place with her Doll. She has been falling a lot more and been off balance so wanted her to wear something that we wouldn't have to worry about her tripping over.
Sebastian wasn't awake during the day which he probably was happy about - he does not enjoy costumes. Both Bentley and Isabelle wanted him to come trick - or - treating so we packed him up warm and brought him out with us, he wasn't overly impressed but some fresh air and change of cenerie are good.Our buddy Andrei comes into Canuck Place once in a while to do some music, so we text him and he came in and he sang and played guitar as well as stel played guitar for what ended up being a pretty big group of kids, and volunteers and staff. Always enjoyable and so honoured he comes in.

Other things going on around here....
Hockey is back in full gear as well as goalie for ringette for bentley. School seems a bit better this year, he has a great teacher who I really think will be great for him.
Stel has changed jobs, its a bit stressful but he seems really happy with the new job. It is a bit further away and he seems to be there A LOT overtime, but he seems happy with the change and benefits and the people.
I have been working very part time for the Burnaby/New West Infant Development Program and very much enjoy my time there and really just needed to get of the house a bit.
Thats us, how about you???

a few pictures from this week

Some fun at the park, looking a little bit scared but having lots of fun!!
some time at the park .

We are coming close to the middle of october and the year is in full swing again. Isabelle will be turning 3 in a couple weeks, where has the time gone.

We were at camp in Squamish last week with Canuck Place, Isabelle was in heaven with all attention she got and swimming each day was a hit! Mike's Critters came up to camp, he always brings excitement for the kids!! The tarantula was a favorite though i declined holding her as well as the most amazing colored snake! Isabelle with the softest rodent in the world, the Chinchilla!! soft but still a rodent!Isabelle touching something, i don't remember but Sebastian is behind her there, though sleeping he was there. Bentley also had an overall good time, was a bit disapointed he was the only kid there with homework, lol!! Sebastian had a hard time, but he was able to stay up there the whole week, which had been questionable at times. He slept a lot and pretty much stayed in his room, but he was there, which was very important to Bentley.

We headed up to Whistler after camp and really enjoyed the day. It was such a beautiful chilly sunny dayIsabelle biked thru the village and the shops!!Some bears on the bottom of the mountain about a hundred feet away !!

It's been a while, so thought i'd give a little update...September is over and everything is back and busy.

Bentley is in full swing at school, he has a great teacher this year and I have high hopes that this will be a good year for him! This is the coolest jumping thing, we all had fun on it! Hockey is back in and it doesn't feel like we ever had a break from it.
Isabelle is back in pre-school and loves going. She is back in ballet and this year she joined hip hop as well - she loves her classes.
Sebastian is not doing as well. He is deteriorating very quickly, his year has not been great obviously, but now its not good. He apparently is absorbing some of his feeds, but he is not able to process it. He is losing a bit over a kilo a month for the past many months and is now only 20 kilos. He is not very comfortable and does sleep much more, but the big thing really is that he does not seem happy anymore. We are very worried about the up coming winter. Canuck Place has been and is a huge part of our life right now. Man, the fighting between these 2 is constant! they seem to love bugging each other!!!