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

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
Stacy

There are some changes coming to Our blog!

I have decided to add some different things to our blog. Since Scrap'N'Play is a family run blog and soon to be store, we will  also be adding some things that may be of interest to other parents.

To explain this, my youngest son, Joey, is 8  yrs old and is high functioning autistic, with many other health issues, including muscle weakness, speech and language issues to name a few. In the upcoming posts, you  may see some blurbs about sites and other things I have found to be of interest to us and pass them along to others. My daughter. Meg, will be 18 this month and has Type 1 diabetes, hypothyroidism and some learning difficulties. With this, I will be adding some facts about Type 1 diabetes, and the other issues to helps people learn what to watch out for, etc.

I will also be adding some of our food and recipes as we try to eat in as much as we can because we have so many food related issues in our house that it's hard to find restaurants that we are able to eat at. :-( 

If there is anything you would like to read in upcoming blog posts, please don't hesitate to email or comment and I'll try to add it to another post. As well if you come across any site that may be of interest, please send it along too.

Stacy

So sorry I've been MIA. It's been a busy summer around here. I don't know how the time flies so fast, but it does and did!

I'm childless for most of the day now that J has gone to school full days. He's at the Glenrose School for more testing and to see what type of school will be best for him. He's been tooling around in his new blue wheelchair and although he is not needing it for most things, he is still getting super tired after walking for any length of time. Like this morning, we were going to go potato picking at a farm but the line up was way too long. It wasn't supposed to start until 9 am and when we got there at 9:15, there was a lineup almost 2 miles long down the highway. And as you know Joey doesn't do too well at sitting for any length time especially going nowhere, we decided to check out some of the local greenhouses around there. We love doing that but some others in the family think it's boring lol

I'm in the process of doing up some bread and butter pickles and some raspberry jam. I got some corn relish done up for Ron and he's so happy now. I'm hoping to get the pickles done tomorrow and will try to upload some photos for you to see.

I'm also in the midst of getting my sewing list together for Christmas. Do you realise that there are less than 90 days left???? yikes!! I know I have at least 20 things to do up so I had better get cracking. That's on top of the order I have for 20 coffee sleeves for the local coffee shop!! I'm hoping that order works because then I'll have a standing order for that one and hopefully more.

I've decided to start adding tutorials and pictures to my blog. I love finding them and sometimes can't remember where I put them lol so I'm putting them here so maybe someone else can enjoy them as well. I will be contacting the people involved because I don't want to look like I'm stealing their ideas. I will also be putting up some of my creations when I can figure out how to make my own tutorial. I am currently working on a new purse design that is backwards my daughter says. But it works for me.

I'll be taking pics of it when I get it finished. I didn't think to take pics as I was doing it, mind you, in some of them, the pics might have had a blue haze ;)

So the kids are off school and Joey has decided that he wants to help me sew. Not a big deal. Today I gave him some material and a pair of blunt nosed scissors that he's used before and a pattern I made up. He didn't do too bad considering he doesn't have alot of muscle strength. He was so proud of himself when he got it cut out. You should have seen his face, it was beaming!

So we've ordered his wheelchair and they say it should be here by the time school starts. We've stated the plans for his ramp. It isn't going to be cheap that's for sure, but we have to make it strong don't we. You would think that there would be people who could help you for a reduced cost, but it doesn't look like it. It's looking like we'll be out $500 for the plans to get drawn up. We can't afford that, but we can't afford not to either, understand? ARGH!!!

Oh well, such is life. Especially my life lately. I know that God doesn't give you more than you can handle, so I guess He thinks I'm pretty strong!!! I don't know about that. But I guess he knows more than I do about what is coming up. I can only hope that it isn't any worse. Having 4 kids with varying degrees of disabilities is time consuming and tiring.

That's enough complaining for one day. Will be back soon.

We went to Great Grandma P's 90th birthday party in Toronto over the weekend and Joey was the hit of the party lol Gran was telling all her little old people friends that her Joey was coming to visit. He behaved very well all weekend and we were so proud of the way he behaved at the party itself. He had a few autistic meltdowns but overall, was really good.

We took him to the Toronto Zoo and had to borrow a wheelchair cuz his legs were bothering him. He stayed put most of the time, but went and visited the animals. He took some pics with the disposable camera we picked up for him . He did pretty good!! Most of the pics were centred too which was very interesting. We didn't make it to all the pavilions, but most of em. We ended up walking over 5 miles!! Yah me!! lol I wasn't even all that tired when we were done, but my legs were sore the next day as I don't have hills here to climb like Toronto. I'll have to figure out how to do that one.

Ken's worker finally called me back today to try and help figure out what to do with that stupid school crap I've been dealing with. He said he will try and get to the bottom of it, but the good news is that he's putting him back to 3/4 time and getting him a grant so that he can finish later if he needs to. I'm sooooo happy that someone is finally listening to me. Now hopefully the school will listen to him. In the meantime, I have to call him in sick tomorrow because someone in their infinite wisdom decided that the class should go to some paper thing that is in the middle of nowhere's ville and require it as something he has to go to. His dr has said he can't go, but that means nothing to these people. ARGH!!! We did get him in to the dr on Friday so she will be able to write us the letter we need.

I'm looking forward to Friday. It is the first day in 2 weeks that I won't have anyone hanging around the house in the am. YAH!!! Meghan has been home because she only had to write 2 exams this semester. She goes back on Friday for first day 2nd semester. She has been doing better with her diabetes, but she is still for some reason not getting that she needs to take her needle every time she eats. It's terribly annoying and I'm so tired of telling her that she needs to do her needle, her test, her.....etc. I'm hoping that as she gets older this will go away and it will happen SOON!

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