Sunday, January 29, 2012

another year, another update...

Another year goes by.... it's been 3 years 8 days since our Sebastian left us. Time goes by but he is missed just the same.

The kids have been their busy selves!
Belly has had a tough year, more so the last few months though...we have watched as she has changed and at times a totally different little girl. Because of concerns she had another EEG December 21-22, 2011, which was pretty devastating for her. The following day, her neurologist called and let us know that her EEG changed significantly. Her last one a few years ago was normal but unfortunately this one shows constant seizure activity in the occipital region of her brain with some rolandic spikes in 2 other areas...pretty devastating news. It does explain a lot but I was more comfortable when i had been told last year that some of the things we were worried about were caused by her new arrhythmia, sadly, now they say its seizures. Apparently her complete exhaustion is not from the arrhythmia but from the seizures. She has done a great job taking anti seizure medication but really doesn't understand what is going on...neither do we! She continues to follow Sebastian's path and we are awaiting to learn more. She has an aid at school which is good, but she is not able to make it though the school day and ends up at her daycare and typically rests or sleeps until we pick her up. If she rests she is able to handle the evening with hours of crying, but we are not sure how long the daycare can have her there because they are not licenced for school age care during school ours....oh so much to learn~ pretty depressing post...
Bentley is doing all his normal things... still so much hockey. He was invited to try out for a few spring teams and was able to choose what team he wanted which is pretty amazing! School continues to come very easy to him...he has been given some challenge classes to keep him interested which is good.
Some snow-shoeing on New Years day! They had a blast!!!
Bentley getting some air in his jump!!
A very rare family photo! Getting us all in for a photo together doesn't happen very often but right after the photo some snow was thrown!! and a snow fight began...
In early September Bentleys team had a tournament in Penticton - they enjoyed some pool time in between games!
Our little flower girl! she had so much fun and did a great job as a flower girl in Jess and Ryan's wedding.