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...

A little update

The days are slowly going by and Sebastian is handling his new breathing issues with his typical strength and bravery. Tonight during a bit of awake time Stel took himout for a little ride on a very cool adapted bike. He looked so happy, unlike anything we have seen in the past long while, he was exhausted after this that he fell asleep pretty much as soon as he came in. To see that smile was so worth it. He is awake a bit more now and though he is still having breathing issues doing very well. We are hoping to bring him home maybe end of the week, which feels so great since last weekend we never would have believed we woulod ever bring him home again!

Oh my, with all thats been going on....I put a few squirts of ivory body wash in the tub for a few bubbles then once there was some water put the jets on for a bath. The bubbles overflowed the tub but they had so much fun and to see that smile on Ben was so heartwarming. He has had a difficult time. Today he had a hockey game and he did awsome so way to go!!!

Stel was planning to do the Canuck Place adventure challenge triathlon again this year but after all the outstanding help and support they have been giving us he is even more eager to help out. He is hoping to find a way to have Sebastian join him in some way if possible. He is again registered and in time his page will be better updated.

Sebastian is holding his ownHe is working hard and so far he has been starting to breath on his own. He does now lose conciousnes, his eyes dialate and shows his brain stem shutting down(we are told by the doctor), he had no pulse and then takes a laboured breath and comes back around so far. he has been awake a bit, but is quite tired a lot of the time.

It's not going well

Sebastian is not doing well. His breathing has deteriorated over the last week or so until thursday and friday when it worsened rapidly. He now stops breathing and passes out. Typically if you stop breathing and pass out your co2 levels go up and your brain kicks in and you start breathing, unfortunatley Sebastian's brain does notalways rememeber to do this. Thursday and Friday he passed out a couple times each day, today it has happened many more times. In the past 1/2 hour it has happened twice, actually now 4 times in about 50 minutes. This is a huge increase...

Sebastian was admitted to children's hospital ICU Friday and transferred to Canuck Place this morning(saturday). The doctors hold no hope, and the ICU doctor transferred him here for end of life care. We do not know where this is going right now, but know that he is a fighter

We are Home

Well, we are home, and so happy to be home.

S's hip is doing very good, he is still on antibiotics for the post surgery infection but pain wise he is doing great.
His stomach not working problem's are not resolved at all. He has a gj tube placed as well as a ng tube. This is the 5th Gj, they keep migrating to the stomach so this one does not have the extra port for the stomach which is causing extra challenges - this the NG tube had to be placed. Now his poor nose has a ng in and the oxygen. We are not anywhere near resolving this problem but we'll see as time goes what needs to be done.

B started his spring hockey league and seemed to have a good game Stel said. Lacrosse has also started up, this will be a bit of a challenge as we do not know all the rules yet.

Baby I has been sick again so we have a bit a lack of sleep due to her being up coughing and or throwing up. She is still loving ballet school, and started going to day-care a bit while S was in hospital. Apparently she can hold her own!! especially when anyone goes near the dollies.

Any of you prayers out there please keep our good friend Michele in your prayers. Friday she had a brain aneurysm leading the doctors to find a very large brain tumor. within hours she was in surgery with the hopes they got it all. She survived to the relief of us all, unsure of the future right now. She is 21 with a 2 1/2 year old at home and a great guy who is staying by her side in hospital.

I do not know where the time is going, these last years have just been flying by, feels like Christmas time was just yesterday, well maybe last week, but here we are into April already.... I am still having a hard time believing my baby, my firstborn will be turning 11 years old very soon!!!!

Sebastian is doing ok. He is staying awake more, more alert and seeming to be a bit happier
His hip infection seems to be under control and he seems fairly comfortable when we lift or move him. Today he had an MRI and is quite pale, his hemoglobin is low, but that is usual. We are still working on how to feed him, so he is still on TPN and hoping to start actually feeding him into his gut very soon. What is really seems he needs is a permanent j tube placed, they have now done 5 gj's but they keep migrating back into the stomach - which isn't working. There are some pretty bad complications which could possible occur from the j-tube, and the surgeon is not wanting to do this - I wonder if he is coming from a perspective of do no harm. We also were very concerned about this tube, but after his primary pediatrician (whom is a Saint I believe and has cared for Sebastian for his entire life) and other doctors whom know Sebastian well feeling this is what needs to be done we also agree.

All in all he is doing very well and now we just need to find a way to feed him - long term through an IV into his central line is not possible.

Well we are dealing with an infection in his hip, thats not a shock!!!
Each time that that hip has been opened there has been an infection.

We are running into some differing of opinions as to what to do about how to feed him and what kind of tube to insert and to where. He is still on the TPN so is getting all that he needs in that respect but has lost a little more weight which shouldn't really have happened.

Today has been a difficult and emotional day but hoping tomorrow looks better

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.