Sebastian has had a better day than yesterday so that is good. He slept a lot but it seemed to be a much more peaceful sleep.

We are hoping to hear monday when he will be going back in for his next surgery, but we are told it will be this week.

Sebastian has had his hip surgery, the metal was removed and off to ICU he was sent. He did very well, that day and night were good for him, but it went very much downhill after that. He is in a lot of pain and having a tough time, thankfully we had a nurse we really like who knows him well and knew how bad he felt.

His j-tube has again migrated into his stomach (for the 4th time since feb. 12th 2008) and he is now awaiting a surgery date to have a permanant one placed. We had really not wanted to go to this step and neither had our pediatrician, but it is no longer a choice. Now even his medications into his stomach have him wretching, gagging and throwing up. Though we prefer to think it is the pain causing his stomach to not work, reality is that it is a progression of his mitochondrial disorder.

Right now he is listening to his i-pod in his special gel bed.

the goings on

Happy Easter Long Weekend Everyone.....

It's been a busy Spring Break, poor B has had to come to the hospital 3 times so far, but he's done great and been good with Baby I. S had to have his J tube placed again yesterday, 3rd time in about a month, this tube is not going well for him....

S will be going in for his 9th hip surgery for the right hip next wednesday the 26th. Due to how bad his hip is looking it has been put in as emergency surgery. We are not certain he is up for this but it has to be done. This is not a great copy of the xray, but anyhow... The big metal has to come out as it has now almost pushed through the skin as well as it is causing him incredible pain. Another concern will be he will have extremely high risk of fracturing as they take it out and in the months afterwards.

B had a hockey tournament and they won all their games and played really well, he has another tournament starting in the morning so hoping they play as well and have fun. After this weekend his regular 2 hockey teams will be finished for this season. He has joined a 3 on 3 team for 3 months and lacrosse, which will be new for him. So he will still be keeping busy!!!

Baby I has been keeping busy with following the boys and all they are doing. She is enjoying her ballet school, they are preparing for their recital in June.

Finally an update...

After a long absence.... an update on what's going on around here.
It has been a tough couple months for sure; I think we are all exhausted and pretty much not sure where life is headed.

S started going downhill in January and by early Febuary we thought we might lose him. He is such a fighter through everything and especially the incredible pain he has from problems with his hip. From the pain, his stomach stopped emptying and a new tube was placed to by-pass the stomach. He did not wake up much during January and Febuary, he just pretty much shut down. He has been in and out of hospital and Canuck place Hospice and is heading back to canuck place Sunday with the hope they can get the pain more under control.

It has also been tough on B and baby I. They are troopers and adjust very well to whatever is going on. B's hockey is wrapping up for the season, we made sure he was able to be at his games, but missed a few weeks of practise and school.

Snow Day

Today began with a wee bit of snow and a lot of ice. B and I headed to the rink for 2 games at 2 different rinks and snow coming down and really hard driving. After his second game (which we missed half of due to trecherous driving) there was more than a foot of snow outside and way more now. We headed to Cobbs and Safeway then maneuvered around stuck cars to make it home. I will just say .....Thank God for four wheel drive!!

Baby I had some fun playing in the snow but couldn't walk, there was just too much. She did decide she liked eating it. B and a couple friends also had fun. They made a huge snow ball, bigger than them, they couldn't even climb onto it on their own!! also couldn"t move it anymore, even with 4 adults helping...S didn't get a chance to enjoy the snow today, he hasn't been awake this weekend, he is having big big problems with his hip again and is not well right now. Possibly tomorrow he will be able to see it.
Baby I continues to love going to Ballet class, after Ballet we head to hockey, Baby I wanted to make sure B's team was on the scoreboard!!!!

Bella the Ballerina

We have been sooo busy, I do not know where time goes...In between doctors appointments, physiotherapy for S and Baby I and B's hockey we have had no days off in the past couple weeks.
Baby I had "Bella"rina class again tonight, she participated more and was not nervous. This is not a good video, but it did upload

I cannot believe B will be turning 8 on Saturday, wow 8 he is growing up crazy fast... Poor guy, he has 3 games on his birthday, 1 as a player and 2 as goalie!
S is having a tough week, he is not himself and not doing overly well. We will be seeing his Ortho surgeon on Monday and hope he has some idea to help with S's pain in the bad hip.

We went skating with some of the Canucks tonight.
S loves being pushed around and going really fast. Sami Salo got him going really fast on the ice. He was soo excited. B pushed him around also and s was just so excited. Then B's buddy from the Island arrived and they had loads of fun till it was time to go home.
Baby I was on baby skates tonight for the very first time. She was ok walking in them on the ground... but once she hit the ice - not soo happy
I think we'll wait till she fits actual skates instead of these things
She did not love then, if the video turns out what she is saying is help help help.... Ok so i couldn't upload the video for some reason, but it was cute, you'll have to come over to see it now instead!! Once we took the skates off she had blast, but we should have kept the helmet on though!!! her poor head.

Then end of 2007

Santa has come and gone, the kiddo's are all happy and having fun. 2007 is coming to an end very soon and looking back we have had a good year. The kids are growing and changing and so much fun, and our life is busy and chaotic but thats what we expect.
Baby I looking cute in her christmas dressWe have been busy, baking for the holidays, shopping(helping Santa out a bit), seeing friends and family and out on the mountain sledding. Of coarse there was still ice time and starting New Years day B has a hockey tournament.
Friends came over with their little ones and Baby I had some sharing issues at first then she had fun with the kids. She is the tall one on the right. The little girl on the left is a couple weeks younger and the little boy in the middle is a few months younger than Baby I. I went to high school with their daddy's and it is so great getting together.
We headed up to Seymour Mountain, it was sooo beautiful and so much snow. We have found that the truck has some advantages..... we were able to make our own parking spot in the snow after driving around a while and finding NOTHING. S loved sledding, it was so great seeing that smile!!!!! Baby I was scared near the top of the hill and by the bottom, laughing and wanting more...
B Loved the day, no attitude just a happy kid. It was great. The boys having fun in the snow!! It is always more fun with friends!!!

She took S's hat and was so happy with herself!! Talk to you all in 2008. We hope you have a wonderful New Year full of Health Happiness and Joy

Its been a busy week, as usual I guess....
The week began with S very unwell and ended up in the ICU briefly.. He spent the rest of the week home and sleeping, he is now starting to wake up and feeling a bit closer to normal.

B has been helping out a Ringette team by being their goalie. He is very shy with the team but when on the ice he is a team player. They had a tournament this weekend and they won 2 of the games thanks to the help of the tournament MVP - our B!!

When she saw Stel outside on the ladder she was very excited and had to climb on the bench and talk to him...Baby I is loving the Christmas season, all the lites and Santa's and the music. This year we put some lights on our little tree out front and Baby I put on some decorations.

This year is just flying by....

The kids are growing and so busy, they are keeping Stel and I busy. Baby I loves her dolls and anything girly

We had a big snow over the weekend, it was really beautiful , our foot and a half of snow Sunday has turned into flooding everywhere today!

B's hockey team picture, he is on the ice 5 and often 6 times a week.The arena is staring to be far too familiar to us!! He is enjoying it though and that's what counts.
We went to a Christmas party Sunday, yeah we ventured into Vancouver in all the snow.... anyways it was so beautiful to be at a Christmas function with all the snow around. the kids had fun, B was soaked from playing, and what a great shot he had in this picture!!!S loves Fin, the mascott for the Vancouver Canucks Hockey team, no matter how S is feeling Fin makes him happy.

We have had another busy couple weeks. B is doing very well in school and he reads so well and enjoys books and school work.
Baby I did not like walking on the Beach, and really hated the wind, but she was cute anyways.S Loved the Beach and the stormy weather the day before, but for this picture it was nicer outside. It was way to stormy and windy for him to sit on his own the day before this one!Stel chose what Baby I was going to wear, let me just say, white capri's while climbing around wet rocks and stuff, not a very great idea!!!B LOVED the wind, it was hard to stand during some of the gust but so much fun climbing. This is one thing he loves - climbing and adventuring in the outdoors.
Our frinds came over to Hornby for a day to visit and we had a great time. The power was out most of the day because of the storms so we went outside to play! We were about to pack up our stuff and head to their place off the island but the power came on at the last minute, too bad. Baby I loves playing with her friends and talks about them all the time.


This is a great picture and looks like he is being safe!

Wait for it, ya just scroll down a wee bit more.............................................

Yup not a shock!!!
The wave was over his head at one and he was soaked, but laughing. Somehow none of us were surprised he got totally soaked!!!

B and I were checking out the cool starfish, they weren't actually starfish they were the ones that are huge and look like a sunshine. There were also a bunch of crabs climbing around on rocks deep in the water
The kids were playing video games in S's room at Canuck Place. We were there for a couple days after Hornby Island trying to settle a couple medications for S.

Our girl is almost 2

Our little Baby I is almost 2, less than 12 hours to go (oct 30th 2005 she was born while B was at a friends house for a sleepover and S was in hospital very sick and it was pouring rain outside...)

Today she had a little party with a few little ones.They made their own bear, or in our case a Puppy at Build a Bear. They played some games and colored while each one got to stuff their bear.After they finished stuffing their animal they all put their hearts in and they were all sewn up. It was then time to wash and brush their animal. They all had fun at this station, from there they went to find bows or things to put on, the girls had more fun with this than the boys... Baby I did not love this part when they sang but for turning 2 she did very well during the whole building process and waiting turns.They headed for snacks and cake. The cake was a big hit and so cute. She loves her new pink computer, now hopefully she will leave ours alone a bit more...Well, 5:45 and she was out...Exhausted from a very fun exciting day. The boys loved the cake, though B wanted the least girly peice we could find, lol and he didn't want a bear so he went and got a raindeer webkinz instead. We can't believe she is 2 already, they are all growing up soo fast

It's the end of another busy week....

The kids and I spent the week up at Camp in Squamish with Canuck Place. Its been fun and exhausting. We saw a bear and lots of bunnies and the kids had loads of fun. They loved going into the pool each day and all the activities. Stel came up friday night and we headed to whistler later Saturday morning. It seems to be tradition to head to whislter after camp and love wandering around. Baby I must have been exhausted after all her walking. Everyone seemed more energized after our ice cream cone!!!

Life just seems to get so busy at times, then add a long weekend and we are exhausted!!

We were on the Island on the long weekend, yes we were crazy enough to try catching a ferry on the apparently busiest long weekend of the year. We did well on our way over, we only had to get up at 3:45am shower get ready and take the sleeping kiddos to the van by 4:30am and head to the ferry terminal. We picked up groceries and snacks in Coombs, Baby I loves the goats on the roof so we had to visit them again. B loves the bookstore and S also thinks the goats are funny. Luckily we caught the ferry and were on our way to Hornby Island. We got a chance to visit up on the higher part of the island and the views are breathtaking! B and I were watching the fish and the so many kinds of starfish. It was so cool B said. B had so much fun outside on one of the ferries, the wind was crazy and the water was splashing over the sides, Stel and I were out with him and we all got soaked but he had so much fun. We enjoyed some beautiful scenery, some insane winds and rain and some very encouraging appointments.

On our way home we stopped in Parksville and B and Baby I played mini golf, then Stel, S and B went in the bumper boats. S was so excited, he laughed and squealed - he was happier than we've seen in a very long time. They all got soaked but had so much fun! We then headed to Nanaimo, we visited my Auntie Pearl. We then headed to the ferry terminal to wait 4 1/2 hours to catch a ferry and got home just in time to collapse into our beds! The alarm clock rang far to soon this morning. We had a very successful Happy Thanksgiving long weekend, hope you did too.