Things are a changing.....

You may have noticed I haven't blogged in a year.  Hard not to notice if you have stopped by, nothing has changed, has it? lol  Well in little world things have changed alot. 

My youngest has been undergoing testing for a variety of medical issues. He has always had low muscle tone, hypermobility, hyperlaxivity, as well as some other issues including PDD, a form of autism.  We have finally had some answers recently as to a reasoning for this, we hope.  He had to have a muscle biopsy recently and while this was traumatic to him, it was needed to figure him out.  The biopsy is leading to a Myopathy, more than likely a Mitochondrial disease (what is Mitochondrial disease) As a result of this, we have had to do some new meds, learn about what can help him and what the prognosis is. We will know more once the results come back, but that may take up to a year as some of the testing is very expensive and they only do it when they have a certain number of tests to do. So the results will depend on where in the testing cycle we fall.  Some of the biopsy segments have been sent to various other testing facilities so hopefully they will come back sooner than later. 

My daughter has Type 1 diabetes and is on an insulin pump but due to other medical issues, she has had to get some other testing done as well and we are waiting for the government testing to get done so she can further her education. We are lucky to be in a province that does this testing for free when needed and the school she is wanting to go to has been very helpful in getting her to the point of testing and hopefully will be starting her courses soon.  She is wanting to help others who will be following in our footsteps and walking down the disabled road.  We have had to advocate for a number of things and she wants to show others how to fight.  I am so proud of the fact that she wants to help others help themselves. :)

The focus of my blog will be changing in the upcoming posts as I will be adding more things about family life, photography, as well as other stuff.  I will still add sewing related items, but as I haven't had time lately to sew, I feel the need to change a few things.

So hopefully these changes won't change your mind about reading my blog, but if it does, may you be blessed in  your lives.

Stacy

I don't know what to do with Ken's school any more. If it's not one thing it's another. It's like they don't know what to do with a family who is willing to argue with what they think they can do. What am I supposed to do, just lay down and let them walk all over him??? HELL NO!!!

Ken has Aspbergers syndrome which is a high functioning form of autism. He is 19 yrs old and sometimes is hard to understand, but he is an amazing young man with the potential to do anything he wants with his life. He went to Norquest because the program he wanted to take is available there. Unfortunately for him, they have changed the course and don't think there is anything wrong with that at all. They have changed the Digital Graphics Communication course to one that is very similar to their pre-press program. He can't and doesn't want to take press work. Because of his health issues, he can't work in the press room. It's terribly annoying that they told us one thing and then changed it all without any warning. We have sent them a letter and told them to look into what is going on and to stop making his life so miserable.

One thing is for certain, the school doesn't know what they are in for. Maybe I will go and take that course at McEwan about Disability services. hmmmmm