Friday, December 12, 2008

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.

Sunday, November 23, 2008

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!

Friday, November 07, 2008

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???

Wednesday, October 22, 2008

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 .

Monday, October 13, 2008

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 !!

Saturday, October 04, 2008

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!!!

Saturday, September 06, 2008

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.

Saturday, August 30, 2008

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 videoBentley is amazing at guitar, I am starting to do really well on easy while he is doing hard!!

Sunday, August 24, 2008

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

Tuesday, August 05, 2008

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!!

Friday, July 25, 2008

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!

Monday, July 21, 2008

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!

Monday, July 07, 2008

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