Its been quite a week, and a good one

I will start by saying, wow, Stel is really quite excited about his up-coming triathalon... He is now doing the medium race, 6km kayak/32kmbike/8km run...
Today he went to his second official training, today was run/hike through some pretty tough terrain. He was glad he had done some running this week thats for sure but is sure glad he has now seen how tough the terrain really is!! He took a couple big falls, but didn't want to get behind so got up and kept going - a sore ankle and a few bruises. He was pushing himself - he is way to competitive! Later this week he is going for his first bike training...




I took the kids to Victoria this week for a few days of exploring.


They all seemed to have a really good time, but I missed having Stel around to help chase Baby I!!

Baby I loved going on the horse drawn carriage, she loved the horse!



B loved going to the bug zoo, one of his favorite places in Victoria!!



The Titanic exhibit at the Royal BC museum was very good. Each of us was given a boarding pass when we entered the titanic exhibit and at the end you could read the wall and see if you were one of the survivors, some of us were not lucky! Baby I did not like the life-size wooly mammoth! S found the museum to be a bit too crowded but enjoyed the other things we did more.


We went on a tour of the parliment buildings, with the wheelchair we had to take a seperate entrance, because of this we got to see the prison cell in the basement which is not part of the actual tour.

A bit of swimming in the hotel pool and then some visiting with a friend of B's at their house way out in Mechosin,
a 3 ferry sailing wait and home we came.
I am exhausted today, but the kids were so well behaved we had a great time.

Another dismal rainy week gone by....

Stel has officially begun his training for the Adventure Challenge triathalon in support of Canuck Place Children's Hospice. Saturday morning 8 am he was off the deep cove Kayaking. Though it was raining, the scenery is beautiful and he seemd to enjoy it. He has come to realize though that he is too tall for comfortable kayaking!!! Tonight in the rain he took the bike out for the first time in possibly 2 years. He decided he needs a new bike seat for when he actually goes more than a couple blocks and for sure no trails on that seat!

We went to see Grease at Theatre Under the Stars in Stanley Park ths week, I highly recomend it. All of us enjoyed it even B who didn't really want to go!!

Baby I has had a very tough week, high fevers then full body rash which she still has. She has Roseola and man is she not a happy girl. She is miserable, we are all miserable....

Sleep has been at a premium here this week... And when this happens I lay awake and think about what needs to get done, what didn't get done, the bills, the future..... I find thinking about the future to be very tough; I think sometimes as a a special needs parent the only way to survive is to do as an addict does. One day at a time. I know that one day at a time is the way to keep my mind clear and positive. But when I cannot sleep my mind fills with thoughts of the future and I just cannot fathom what our future will hold. Though S is doing well and he does make advances in his own way and time; he knows so much but just cannot show us and he does get frustrated with us when we don't know what he wants or when we answer in the wrong way. But as time goes by the things that were so cute as a toddler and child won't and aren't seen as cute as an adolescent and teen. We love him fully and that will never change. I also worry very much about B and Baby I; they adore him now, but will there be a day when they loose their affection and it turn to embarrasment? It is so hard to be different when you are a kid, will they be strong enough to embrace S and love him on an unconditional basis? Will we raise them right.. B is so beyond fantastic to his siblings, we are so proud of him. Recently with friends over, one friend made a comment that S doesn't know anything and instantly B stood up for him and told him he is so smart and does know a lot, just that that friend doesn't know how to talk to him and watch for S's answers. I had been in the washroom and overheard them in the back-yard and was just so proud of B, and so glad that that was when my bladder was full so i could overhear this.... B is always standing up for S, I hope Baby I will also be so good with her big brother.

Summer is here, pool time has begun in full force and it is hot!!! I know we shouldn't play with our food, but she was having such a good time....
We've begun some back yard clean up, taking down some trees and rotten fence is always more fun when you get to use big machines. B learned how to drive the truck and thought it was pretty cool!!! Its great to have neighbours that like machines too!!

There are 3 1/2 days of school left till summer holidays....sure hoping that summer weather will also finally start ....

B seems to be looking forward to summer holidays and we are sure hoping he will find grade 2 more challenging and exciting (grade one was a bit of a let-down for him).


B enjoyed his sports day on friday and he and his friend took baby I in the pre-school race, she did not enjoy having to wait in the line for the race to start, but they were cute.
S is doing better, still struggling but getting a bit happier. He sure isn't our happy guy yet but slowly slowly getting there.

Baby I is doing well, she loves her babies and dollies now.. She loves her steamed milk and her brothers and her new found mobility - shes fun and exhausting, a joy...







Last weekend we had a nice dinner at Gramma and Grampa's Saturday then Sunday we took the kids to the Tim Mcgraw and Faith Hill concert, S loves music concerts and we wanted to do something for him that he loves. He did have fun it was so great to see a smile.





Baby I and B fell asleep part way through, but they did enjoy the part they saw, Baby I was dancing and clapping along.Baby I wants the same vehicle her mommy wants!!!!




We headed up for a bit of a easy hike in Capilano, S was so happy to get out , its been a long time since he could enjoy a bumpy wheelchair ride, but he did pretty good. B loved the climbing and getting dirty and Baby I had a lot of fun on the trails.


She fell once and got her knees dirty, not hurt, and cried because they got muddy, kept saying wowie wowie.






then we took a wander around the salmon hatchery and watching the salmon trying to jump up the stream to get out.

Some things Baby I did today!!

Well she played a little air hockey ON the table, and apparently she was winning!! she is quite an amazing climberNot long after her hockey game we found her here....
She finished her dads bun and decided to see if there was anything left for a little drink
She had some fun with the pans
And played a little street hockey to finish up her afternoon!!!
We went for a rollerblade around the neighbourhood, everyone had some fun and no one had a crash so a very succesful adventure. The boys had a much less adventurous day, but B totally enjoys the things Baby I gets into/onto/over.....

Its been a busy busy month for us. B has the countdown on for the end of school!!!
S has been having a tough tough month, he's lost another 6 pounds in the last couple weeks, hoping that June is easier on him.
Baby I is incredibly busy and loves to wonder all over.

Baby I had a great time visiting Maplewood Farms. She tried copying the goats and wanted to try eating off the ledge but decided to give the goat a kiss instead. She followed them around all over. She feds some chickens and loved the huge rabbits.
We didn't stay too long, it was too hot for S but went by a pool on our way home and Baby I and B had soo much fun enjoying the water.
S put his feet into the water a little and seemed to enjoy the water as long as we didn't splash him. Baby I would check on S every few minutes.

Baby I -- all smiles
She is off and running now...

I went out tonight, which is weird all in itself. It felt odd leaving Stel and the kids at home but I knew they could handle it. met up with a girlfriend and we went for dinner then to see Jann Arden. The concert was great, she is a great entertainer and just so funny. Why is it then that even though I was enjoying myself, I kept thinking of: I wonder if the kids have had dinner/ or did they eat it, then later, I wonder if Baby I was put to bed yet, how is S doing, is he comfortable, Is B in bed yet and so on... I did have a good time, everything is perfectly fine at home and ˆwonder when I will do it again?

We thought today was casts off day for S but no such luck, we'll try again in another month, poor guy - they are so uncomfortable and hot,but on the upside, he can sit up now so yipeeee
So I thought this water play thingy looked really coolbut maybe its just not for her!!! there just isn't enough room to swim...

Life has been busy and life is coming under control and our home is becoming our home again. It feels so good to be able to lead our "normal" life again!! We are exhausted and keep finding things we have to do or want to do. The ceilings look great, so much better than before.
B was quite sick for a couple weeks but is feeling much better and was back to school this week. Since the weather has been improving we've been out playing hockey with him ever night!
S is very sick right now, sure hope he will begin to feel better very soon. He has been doing quite well with his cast and has been doing quite well until he got sick this past week.
Baby I as become a very busy little girl. She loves to climb, especially onto the compuer desk to watch the pictures!!

Hi, here we are again....
We will be trying to paint the house possibly thursday and/or friday morning (or saturday if we need too) and picking up the moving truck friday mid-day to move back into the house. So if anyone is bored and wants to drop by.......

S is doing quite well considering he cannot really move or do all that much. Baby I was so happy to finally be able to be on the bed with S here in the picture she is giving him lots of kisses.

We are staying at our very awsome friends right now, their home of six is now a huge home of 11!!! We have had our fun.... Suzanne and I ventured into the toilet with an Auger to try fishing a flushed fisher price little person through to the sewer! Thanks guys its very much appreciated - I don't go and get Augers for just anyone!

B went to the first Canucks vs Dallas hockey game, he had a great time!!! Way to go Canucks for moving on to the next round --- Hooray

Baby I during her EEG. She looks like such a big girl sitting there!! She did such a great job, even fell asleep when she was supposed too.

We had a long 9 hour wait while S was in surgery. Amusing her was not always the easiest, but she did enjoy listening to her music!! She had lots of fun wandering around and buying a balloon

Well thats about all i've got right now, cheers

S is doing quite well. We are hoping to get out of hospital Thursday now so that will be nice.

He is no longer able to eat due to some complications ofremoving a device from his chest. The wires were attached around an artery, the vagus nerve and to the vocal cord and the vocal cord is now not working on one side. we are hoping this is not permanent, but for now and the next many months for certain he will be on his feeding pump, poor guy . Stel and I went searching through the storage unit looking for his feeding pump and found it!!! We were feeling very good about ourselves for it felt like looking for a needle in a haystack. Sadly, it is not working properly, apparently from lack of use so I had to send it out for repair, sure hope that it is an easy fix and not incredibly expensive. I guess the good thing is we figured this out before we were out of hospital and desperate!!

We are all a bit tired, but it looks like the roofers should be putting a new roof on the house this week, keep your fingers crossed. Once they are done the inside guys can begin. We are so glad there are plans for repairing, but it sure has taken a lot out of all of us.

B and Baby I are doing very well, but I think they will be doing much better once we get out of hospital and have some space and freedom again. B loves school here but gets bored in the afternoons and Baby I wants to visit the nurses whenever possible!!!

S had a pretty good day today. He is having some problems with some antibiotics so hopefully that will resolve quickly. He has to go back into the OR saturday, but that should be quick and done within an hour.

B really enjoys going to school here at the hospital, they really challenge him so he's sure been happy with school, but he was bored this afternoon so we'll have to get him outa here and having some fun over the weekend!!

Baby I loves the attention from all the nurses, especially when they take her out and around!!

Canucks lost tonight in game 2 of the playoff's, sure hope they are back and ready to play for sunday's game.

We think we may be able to leave tuesday, yipee, still working on where we will be headng though. Our house should be getting a new roof this week coming up , then the contractor should be able to get in and repair the ceiling everywhere. We are praying this will happen early in the week so we can get in the house soon. its been a long time!!

Hope all is well with you

Hi Again,

S has had a pretty good day today!! He has been awake and rather smiley - some smiles are from withdrawl from morphines but hey he is smiling.

Not sure when we might be heading out of here yet but its great that he is now awake!

Stel and B went to the first playoff Canucks game. They had a great time, can';t believe it went into 4 overtimes though!! they didn't get back to the hospital till after 1:30 am - they were both very tired happy guys today!!

Goodnight

Happy Birthday S

S is 10 today, wow I just can't believe 10 years old!
And another birthday spent in the hospital.

S is fighting to recover from his surgeries as well as heal from the pnemonia, so again today he didn't really wake up. we did see him open his eyes 2 times for maybe a couple minutes, but nothing was really registering. His breathing was not as laboured today so that is good. Another anti-biotic was added and we are hoping it works wonders for him.

Cheers from BC Childrens

Well Hi

Further to yesterday's bad day the night just got worse!

S needed another blood transfusion and now also has pnemonia. Sadly recovery is again tough for him, but on he fights!!!

Happy Easter Monday