Monday, August 26, 2013

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.


Wednesday, June 13, 2012

It's been hard, easy and sometimes (eek) normal year so far!

This year has been hard, in ways I never imagined.  I had to start working at the youngest's school because he needed his blood sugars to be tested as some of his tests came back different.  I think they did it to shut me up, but they are finding it wasn't as easy as they thought. Now we've been told they are closing his program down and he's having to move.  Those of you with autistic children, know how hard this is for all of us, but especially for him. He doesn't like change and it's starting to show up! Majorly!  He's having more meltdowns and it hasn't been pretty.  Came to the point today where I'm really thinking it's time to pull him from this school and being done with it.  I'm done with the stress it's causing both of us and because the school can't handle things like him being in a wheelchair for outings, he's being singled out and not able to go on trips. This is wrong and frankly, I'm tired of fighting. I'm tired of having to fight and I'm tired of what it's doing to J. 

Another change is that Meg, my type 1 diabetic, was diagnosed with nerve damage in her feet and some in her hands. This has made it so she can't work and she needs to apply for help.  It wasn't easy to do, but we just received the new health card and we were very surprised to see that her insulin pump supplies were totally covered.  NO cost to us at all!!! This usually costs us $300 a month!! So nice not to have to pay that up front and hope that it's accepted from the insurance company in a timely manner!

Because of all this going on, I haven't been able to get into the craft room as much and it's hard to get back into the swing of things.  I've got all these ideas but am having a hard time getting up the energy etc to get down there and actually sew something up.  I know I need to get things done, I have a TO-DO list like no tomorrow.  I know I have to get started on the Christmas stuff soon or I may not get it done either.  If anyone sees my get up and go, can you tell it to get up and come back?? LOL 

Some good news that has come up is hubby's photography business is starting to get going. He's going to be doing a Little League thing here in August and hopefully will be getting some business from that as well.  He's such a great photographer, he deserves some good stuff to happen. He's helped me out so much when my Fibromyalgia is acting up and he works so hard so I can stay home with the kids.

Hopefully you are having a fantastic year and if you are having one that is a little harder, remember that tomorrow is another day and will get better. It can't always be bad!

Love and hugs

S.E.N.S.E. - Respect a Child's Sensory Differences...It Will Change How You Respond

I found this on  Having a child with sensory issues is hard and can be even harder to understand. This has helped understand how to help him. Hopefully it will help someone else out. 

S.E.N.S.E. - Respect a Child's Sensory Differences...It Will Change How You Respond