Fantastic race Stel and Suzanne

Way to go Stel and Suzanne and everyone who did the adventure challenge!!

Thank you so much to everyone who helped Team Scattered Limbs raise over 3700.00 dollars for Canuck Place Children's Hospice!
For Sebastian Stel finds the stamina to do this adventure challenge for his 2nd year, he said!Heading out on the first leg of the race looking fresh and ready to go.......
Coming in after the 6km kayak and then heading out for the 32km mountain bike ride up Seymour mountain in the back country trailsHeading in from the the rideHeading out on the last part of the race, the 10km trail run back up Seymour mountainHeading in, completing the agonizing Triathlon! Congratulation Suzanne and Stel, you did an amazing job!Truly amazing!The kids did a great job also, its not always fun being woken up early and having to hang out in Deep Cove from 7am until close to 4pm. Seven kids and a puppy played lots, complained very little and ate well.

It's just a matter of days now before a new school year begins... I hope Bentley has a good year, tonight I checked the class list on the school front door, and if there are no changes he will be in a split class with a teacher I hear is good. Soo hoping his year gets off to a good start.

Today we went to the PNE. We haven't taken Sebastian to anything big like this in a long while, he did ok, but was a bit too much. As we walked around we thought how nice it would be to be in Disneyland again. Our friend met us there and it was great for Bentley to have someone with him. Rob, Stel and the boys went on the log ride together, Bentley was really happy Sebastian went on it, it was his only one and the sad part really was that despite his love for rides he really did not enjoy it. He did like some of the music, but it was all just a bit too much for him.

The reason for going today actually was Isabelle's little dance class was doing their performance today.The girls did a great job.
Rockband is a new favorite game here Bentley is amazing at guitar, I am starting to do really well on easy while he is doing hard!!

We just got home last night from being in Canuck Place with Sebastian for a while.

Sebastian is not absorbing his feeds well, though has to be absorbing some, he is continuing to lose weight and is just not the happy aware boy we are so used to. While there it also became quite clear that his heart rate is slowing down as well. They did not have any good answers but time will tell.

Stel is now less than 2 weeks away from race day! Sure is coming up fast

We headed up to Golden Ears Provincial Park for the long weekend. Once the rain stopped it was beautiful, hot and dry - perfect for camping! The kids had lots of fun and were great.Isabelle insisted on wearing her life jacket for the day of chilly and rain! it wasn't that much rain but when she fell down she was stuck, looked liked an upside down turtle that cannot get on its feet again, lol!Something very rarley seen and even more difficult to actually capture on camera - A Bentley smile! Sebastian also did well and for the most part seemed to enjoy himself.
Bentley loved the water, and spent hours playing around. Stel took Isabelle and Sebastian separatley for kayak trips around the lake. Bentley found the water a bit rough for going far, there were so many speed boats I think he felt a bit unstable but loved swimming.
Even camping Isabelle has to have her cheerios and milk!

We are heading into Children's Hospital for the week now for a whole bunch of testing and stuff for Sebastian. I am anticipating a long boring week for Isabelle and Bentley! Hoping for not too much complaining and at least we will have air conditioning for this super hot week!!

Our Week

Its been a very busy but fun week.

Bentley went to goalie camp each day at Puckmasters, and they were worked soo hard. They were on the synthetic ice which is harder to skate on and it was hotttttt. They did 3 hours on the ice and then 3 hours dry land training. Though he was defiantly tired, he did fantastic and had fun.

Isabelle decided she also needed to play hockey so she started her first lesson on real skates.....I can't get the little video to upload, how disapointing, so here are a couple pictures!She needed lots of help at first then she started going a wee bit on her own
And she even was hitting the puck with out support!


Sebastian seemed actually happy a little and a bit alert, though he tires easily and quickly he had some energy.

One of Sebastian's nurse's lent us their kayak to help Stel with training. Only problem is, Bentley wants to go now that he realizes he really likes to kayak!! He's been continuing to bike but often has a sidekick in the little sidecar! Isabelle loves going! But so far he is on his own for the trail running!
Thanks so much everyone for your soo generous donations, Stel is trying to beat his last year total!

Kayak Training Day

The training has begun for the Canuck Place Adventure Challenge....

Just getting prepared to head outThere they go.....
The kids decided which kayak Suzanne and Stel needed and enjoyed watching them head off before we headed to the playground and then the beach for some exploring

Watching them come back in....
Later in the day we headed to Sasamat and Bentley loved kayaking, about 3 hours actually till we could get him back onto land. Isabelle and Sebastian also enjoyed some rides with stel!
he only fell out once, as he was trying to climb onto some logs!

Adventure Challenge

Stel is participating in the Canuck Place Innovative Fitness Adventure challenge again this year in support of Sebastian. Canuck Place has been such a vital support to our family this year as Sebastian's health has declined so significantly that this is one way we can help to give back.

Last night while having dinner with friends our great friend Suzanne decided she would be Stel's partner and they are now team Scattered Limbs!! If you would like to support Stel and Suzanne go to:http://www.adventurechallenge.ca/ and click select a participant and then stel. You can also go to about the challenge to see a bit more about Sebastian as well as a a news video clip from last year: he was looking much happier and healthier in that video
Pictures are from after finishing the race last year!!
Heading out on the kayak part of the Challenge

Summertime fun

Isabelle was not so sure about the waterpark. But she LOVED the pool the next day! We went to our favorite outdoor pool and everyone had fun.
Sebastian Loved the waterpark, his wheelchair may not have been quite as happy being so soaked. He also enjoyed the pool, it was so hot out.
Bentley and Isabelle enjoyed exploring the beach in white rock and throwing the rocks into the water, until of coarse Isabelle fell in.
Enjoying the pool

June is quickly coming to an end and we'll have to plan for summer!


We went to Seattle for quite a few days last week and met up with lots of friends. It was great, just not long enough. We love wandering university village and the zoo. This was taken last week and the one below was taken 2 years 1 month and 2 days earlier... how time flies Tamie and Helene's families are not used to our crappy weather, Joyce's and our families were prepared!! We had some great meals at red lobster and claim jumpers and lots of time enjoying each other. We got home and were right back into the busy life!
Bentley had his last spring hockey game on Saturday, so the hockey/goalie equipment can be put away for a while. Sebastian will be relieved to have a break from the ice arena!! He is doing ok, still goes blue and passes out but trying to do whatever we can for him. Though he gets tired easily he is still happy

Isabelle had her Ballet recital this past weekend as well, busy times here for sure! The girls did such a wonderful job, Just way way too cute!!!The girls did a great job! Hope this little few seconds of video works for you..Isabelle with her ballet teacher, MichelleAfter the last recital Isabelle went by the Maplewood farms to see some of the animals. She had loads of fun and loved petting the animals.

Ballerina picture day

Today was Ballet Picture Day. The kids had to wear their recital outfit. These were taken while we waited for pictures and in line to go into the picture room.

Isabelle is preparing with her group for their recital at the end of June. Watching how they did for pictures I am not so sure any of them will actually get on the stage!!!!!

no school friday so we went to science world

Friday was a porfessional day so I decided to take the kids to Science World for a while. The boys spent a lot of time in the downstairs mind puzzle area which they both really seemed to enjoy.
Bentley had a lacrosse game, they are doing very well. We are still very impressed how quickly he caught on and how hard he works.
This was a puzzle, Isabelle wanted to do it, she was too small so she made do!!!!! She actually put all the pieces in the right spot. For the older kids they have 15seconds then it alarms and all the pieces pop out.
Lots of Bellas

May is almost over, school is coming to an end shortly and the weather is getting better, hopefully summer is finally starting!!!!!!

We went to the aquarium for dreamnight and the kids seemed to all have fun and got to touch and see things they don't usually get to on a normal day. Sebastian smiled and we have not seen that in months....Bentley was so excited about Indiana Jones movie opening that he has seen it twice!
Sebastian is doing ok, thats all i really know. We seem to start feeling comfortable with how his breathing is, have gotten a bit used to his eyes rolling back and passing out but then he takes a breath. But then bam he does another 5 minuter! Scary but there just doesn't appear to be anything to do for him. He doesn't have the energy or excitement he used to and he now is having so many more seizures, from the lack of oxygen. Stel's work has been painfully slow, but on the upside he has been able to be home with Sebastian more. We were able to take Isabelle out to the park a bit on her own which she enjoyed so much.

Isabelle likes taking all the little hats off bentley's lego storm troopers!!!climbing around at stanley park

Another week gone by so fast and another busy weekend coming up....

We decided tonight to head out for a bit of a walk since it wasn't raining yet and forecast is for rain all weekend, how dismal.
everyone seemed to enjoy themselves and the kids enjoyed exploring. they got to see lots of baby geese and ducks and 5 beavers from a distance. One goose was hissing at Bentley and tried to give his bum a little nibble. Isabelle would get frightened if the goose would come towards her hissing though. Sebastian enjoyed being outside as well

Sebastian has had a reasonably good week, but a bad bad day today. We are not sure what is ahead for Sebastian and seriously wonder just how much he can handle.
Stel and I went to a little boy's funeral in Westbank on Wednesday, what a day but we were glad we were able to make it happen for his parents. They are amazing people who we have had the honor of becoming friends with.

we are home

We are home, actually we have been home for a few days now, but life doesn't stop so we have been busy since coming home.

Bentley has been busy with both hockey and lacrosse and Isabelle had ballet class with an upcoming recital in the works.

Sebastian is home now. He seems to be stable but his breathing all depends on him right now. Both Stel and I didn't think Sebastian would make it. Being home has been good but also a bit scary. Isabelle's lazy hair day...