SPED

​I am so frustrated right now. Yesterday was soaring to high school event at my youngest jr high. It’s to help prepare and figure put classes to take next year. Well only if your child is not in the sped program. No information was given for sped kids. All these cool classes were talking about? Not for sped kids. Class schedule? Will be figured out by the school. When will we get information about what his schooling will look at? Maybe sometime in April. Why can’t they have a pamphlet something that gives us parents an idea of what high schools will look like? My special needs should going to High School is giving my anxiety and giving me no information at all what it will look like while the rest of the students get information is so beyond frustrating. Especially when it was said that all eight graders needed to go to this. Just you know not my child because he isn’t normal. So inclusive of them.

Money grubbing apps.

​ Wow blogger

 Vey thing has really become a money grab.Should not be surprised that like everything else blogger now charges to do some basic things on a blog. Well due to medical bills and the expense of one of my child’s meds there is no way I am paying any money to them. So no more pictures on this blog and it seems beyond crazy to me that they limit how many edits you can do on your blog? Like what? Oh well if I have any typos they’ll just stay because so many sites are trying to bleed us dry with fees.

Hi

​So it’s been what ten years since my last post? I’m not sure what I’m going to accomplish with posting again just I’m tired and want to release some of my stresses on here. 

Where do I start. We found out why my youngest was going through all he was going through. He has a rare genetic disorder called puff-60 syndrome. Less than a hundred in the world have been diagnosed with this. As far as I know he’s the only one in our state. Neither myself nor my husband is a carrier so it was a random mutation.

It’s a bitter sweet answer yay we know what he was! Boo it’s so beyond rare that we have very little to no answers. There is no cure nor medicine to help him with the enzymes his body does not make. Unless many more people are diagnosed with this genetic disorder little to nothing will be done. It’s not profitable to pharmaceutical companies and if they did make something for it we would never be able to afford it.

Insomnia

So sorry for my lack of post my insomnia is kicking my ass and I haven't been in the right state of mind to write. Honestly not really am now just figured I'd give a short update. Hubby is still not all that great they are trying to find the correct dosages to work correctly. I finished season 3 of Orphan Black haven't watched season 4 it's not free on prime and so decided to find something else to watch which I never have. Watch the first season/ episode of Sherlock and will be watching the other two. Definitely enjoyed it more then I expected. Not much else going on boys had dentist appointment today and they both did well.

First pic was from six months ago second today boys sure are growing!

Darkness Fair by Rachel A Marks, book review

 

Against the backdrop of an ancient battle between the forces of Light and the forces of Darkness, Aidan struggles to control the newly awakened and enigmatic powers that seem to be his only hope for rescuing Ava, his little sister, trapped somewhere beyond the Veil. As he gravitates to Kara, the beguiling and dangerously unstable girl who helped him realize his abilities, a terrible mistake of fate is revealed that points him back toward Rebecca, whose role is becoming more critical to the battle. And no matter what his heart wants, it might be too late to stop the pieces already in motion.

Without knowing the sacrifices that will be required of them, Aidan and his motley crew of friends—each with their own role to play—must face the demon threat head-on. They’re the only ones keeping the growing army of Darkness at bay, and if they fail, the future of humanity could be lost.

Honestly I do not know why I like this series but I do. Some of the characters are s bit cliche and when I look back at it not a ton happened this one and yet it kept me entertained. And unlike most books I've read as of late there wasn't any blaring parts that bugged me. Overall I liked this book the backdrop to it is more unique them some and one part even made me emotional.

The only negative thing I can say about it wax there were a few grammatical errors that should have been caught before it was released and even those were not as bad as book one. Saw only a few small errors there were more in book one. I will definitely be reading the last book in this series I gotta know what happens and especially what the hell is going on with one character in particular. Won't go into detail because I do recommend this book and the twists in this one are not fully predictable.

Halloween summer festival

Took the boys to the Halloween summer festival in Magna. 

Overall it was fun mainly went for the boys they love anything and everything Halloween. So we went. It mainly had booths that people were selling stuff out a grabbed a few cards from some of the local artists so that I can follow them on etsy.

The one on type has the cool looking jars with different items in. One I really liked I love seashells and it well contained seashells and was thirty dollars and as mentioned I don't have extra cash right now but looking is fun. 

^ screen cap of her etsy shop.

The bottom one  hillzart had some very unique drawings and some pretty jewelry made out of wood.  I've included a secret cap f some of her jewelry From her etsy site, so pretty and unique.

Went with my parents to the festival since hubby is adjusting to his new meds but not that well. Betting he will be calling cardiology once again tomorrow.

Also while we were out some people were dressed in some strange angle costumes guess they were unhappy with the Halloween festival? Not so great picture below its behind d the car :/.

Lastly two more photos from the festival top Star Wars motorcycle from Salt Lake Comic Con. And last speaks for itself just a random photo really🎃. 

Progress

Hubby was seen by cardiology once again today because he is tired of the aweful side effects of his medicine ch and needs something to be done. This time they listened! They have decreased his beta blocker by half and for the next two weeks no cholesterol meds. Hopefully he will feel more like himself. He's hoping he feels better by Saturday because I have plans to take the boys to a festival with my parents and he wants to feel well enough to go will just have to wait and see.

Side note I am so frustrated with my yard right now. Trying to keep it in ok shape. Can't add anything to broke for thy but at least trying to keep the weeds at bay but these keeps happening:

Think we have a vole problem. Darn little guys keep causing dirt piles all over my grass the damn things are destroying my yard. Don't know what we can do to get rid off them either. Can't afford an exterminator and doubt it would work hey are not just in my yard. Kill them

And they'll just come back :/. All I can say is they suck.

Orphan Black

After a while I can't handle the stuff the kids watch. So I was randomly looking at what was avaliable on my kindle through prime. I found Orphan Black and decided to watch the first episode. I'm now on season two because this show has me hooked. I won't go into to much detail but the main actress in this show is really good. She plays multiple characters and I have to constantly remind myself that it's all done by the same person. The characters she plays are so very different that it's hard to rap your mind around the fact it's all the played by the same person. The show is a bit sci fi-ish but yes I'm loving it. The first three seasons are pfree on prime hoping season four which just recently finished becomes free soon to cause I want to watch them all. 

I also may be back to reading more. After a week of insomnia I realized the nights I tend to sleep better are the nights I read a few chapters right before falling asleep! So yes back to more reading everyday again. I slept a little better last night hopefully the same thing happens tonight.

Sigh

Can I just say that medical stuff in general is beyond frustrating?? All these tests and still no answers from the doctors. He still feels off and we,as in him and myself feel it is side effects of the beta blocker he is taking but the doctors will not look at it or listen to us.

All we have been receiving from them is hey his heart looks great you shouldn't be having these symptoms! But he is! Gah! He's taken the papers in for his medicines which clearly list the side effects he is dealing with but they won't say that they could be causing it. So frustrating. All my husband wants is for someone to listen to him and see if he can be put onto a different beta blocker. He's looked into it the one he's on is not the only one he can take now to get someone to listen to him :/.

Small side note my next book review may not happen for a while. I am not in the right state of mind for reading. Once I do finish the book I'm reading I'll review it. It just may not happen this month.

Zzzquill produce review

Received this from influenster to review the product. It came on Thursday just about perfect timing to be honest I've had little sleep since the first of July, insomnia plus panick attacks sucks ass.

Ok tried it last night and firstly I admit I did not follow the instructions😳. Bad girl right? Now what I didn't follow is that it says is to take two, I took one. I tend to have medicine effect me strongly I only ever take one benedryl at s time fue to hoe I react to it. Two makes me incredibly tired and can't wake up in the morning. As a mom. I can't have that so to make sure it doesn't have with this I took one. Still took me time to get to sleep but after realizing our total out of pocket for medical is 4000 which we hit and not 2500 like it use to be it makes getting to sleep harder. Yay for constant anxiety attacks over well everything. :/ Need to find a way to make a little extra money my etsy store which hasn't really been used might be soon. Shop name rainbowkitties if anyone is curious.

Anyways back to the product once I fell asleep I stayed asleep which hasn't happened for a few weeks now. Do I call that a win 🙂. I am thinking about buying more so that after a week of insomnia I can at least get some rest on the weekend and I hopefully won't completely loose my mind. Really do need a little extra help right now so like I said this came at the perfect time. So thank you Zzzquill for the much needed 💤 last night.

Results

Ok after the stress test the tech did not see anything that was alarming do wee were sent home to wait for someone else to more thought look at it and call us later. Well they just called and overall everything looks fine which means stuff may point back to what I think it is side effects of the medicine he is on. He sees his cardiologist later this month and we shall see what he says. But so far nothing but good news!

Update

Slight change in plans they are doing the stress today we are just waiting for them to get him to do it.

ETA ok they are doing the test now we my not know the results until later today or tomorrow.

ER

We are back at the ER because hubby is still feeling way off. No idea if we will get any answers today my guess we won't cause that's how it been the past few weeks. Hoping the stress test on Saturday tells us something.

Quick hubby update

So hubby is still feeling off he went to see cardiology today and they are not sure what is going on so come Saturday they are doing another stress test. If things look ok he goes home of not he is being admitted and another angio will be done. There is a chance one of the stents is not working properly we will see.

Fourth of July tradition

Do it has become tradition with th boys to play on the water for the past four years. Definitely one will keep going.

2016

2015

2014

2013

How does that make you feel?

Took A to the children center under the advice of his pediatrician. He thought that maybe they could be helpful with them. Basically they are patchologists for kids. We went on Wednesday for his evaluation. Honestly I was not looking forward to it because I did not want him being diagnosed with something I knew he didn't have.

 

Learned something sbout myself that day I am not a fan of talking about my feelings to a complete stranger, at all. A would be doing something and she kept asking me how I felt about it most of the time felt not much was just watching A snd hoping they didn't bring up any problems I know he doesn't have. But of courage hey tries she said he had a few tendencies of autism because his hands twitch a little. *roll eyes* That's the only autistic thing he does. When asked what I felt about it I just said nope not him. He doesn't rock, react to bright light lights, or loud sounds and he makes eye contact to everyone. I know his delays are due to his heart surgeries. There had been Dom correlation to this as well. 

Even last week one of my heart mom groups was deiscussomg speech delays and a lot of moms like myself mentioned there kids all have them. And yea u an saying all this cause the lady was trying to say it wasn't correlated which I admit annoyed me. Good news is she didn't feel he needed to be seen there and does he thetapy should be enough ❤️. Yay! But she mentioned I should maybe have him tested to see if he needs physical therapy if it's not one thing it's another.

Lastly shout out for ideas my husband is on a low salt diet and we need recipe ideas! If anyone have any ideas let me now. 😊

Follow You Home by Mark Edwards a book review

It was supposed to be the trip of a lifetime, a final adventure before settling down. But after a perfect start, an encounter with a young couple on a night train forces Daniel and Laura to cut their dream trip short and flee home.

Back in London, Daniel and Laura vow never to talk about what happened that night. But as they try to fit into their old lives again, they realise they are in terrible danger—and that their nightmare is just beginning…

For the most part I liked the book, didn't love the twist ending tg be part of it is because the character it dealt with didn't care for her either not that the other character was oblivious to it. Now the book could have been better there was some parts that just had big errors. If only the author did just a little bit of research and it would have been better. But I know what is going on here. The author who isn't a terrible writter had two top seller books and this one? Was written a little to fast so it could come out on the coat tails of the first two books. He should have taken a little bit more time to flesh it out more.

One of my problems with the book is that the main characters supposedly British use American slang and covert kilometers to miles but only Americans use miles. British terms are randomly used but slang is never used by the characters. I mean if your writing someon from a specific area use there slang! Bring in the authenticity. Another was that the main character bought  something online right after his debit card was cancelled because it was stolen. I know it was written because the author was being lazy still come on you can't use the card right after it was canceled *face palm*.

One more thing that can be spoilerish so don't read if you are going to read the book though I figured it out right when it happened. Anyways here comes a spoiler turn away before its to late! The main character Daniel is an app maker and was stupid enough to open an email from his x girlfriend which was obviously not from her and put s virus on his computer. Now come on if you are a computer techie your not going to click the obvious virus emails seriously why put that kind of stuff drives me crazy!! Ok *takes deep breath* better now. It wasn't a horrible book it kept me interested and parts of it I had a hard time figuring out but others like the twist at the end just annoyed me. From other reviews I have read Mark Edwards first two books are much better then this one so those would probably be the safer bet over this book.

The helpers

 This is going to be a new type of post I'll will be putting up from time to time. In a time of so much negativity we need to seek out the good, because it tends to be buried just below the surface of all of the bad.

http://www.orangeobserver.com/article/residents-respond-orlando-mass-shooting-donating-blood-droves. 

http://www.orlandosentinel.com/news/breaking-news/os-orlando-nightclub-shooting-blood-donations-20160612-story.html

The call for blood donors to help the victims in Florida was answered in miles of lines of people. ❤️

http://www.fox5atlanta.com/news/158700906-story

Chick-Fil-A employees made sandwiches on Sunday and brought them for the people waiting to donate blood.

http://avc.lu/1OlaDds

The go fund me page to support those affected has reached over a million dollars!!

There is some good in the world and it's worth fighting for.

I absolutely love this quote and have always believed this.

I now people wonder why I read so much about the halocaust because of the reason above. Yes it was a horrible time where a group of people did terrible things to other people, but buried under surface was people who did what they could to protect others. Even at the risk of there own life. There will always be ad people but there are good people to. Sure there are Hitler's out there but there is also Schindler's. Saw it today after the call for blood after the massacre brought out s lot of people. The lines of people show that even though there are bad people in the world the good far out number them it's just the other group tends to be louder and of course scarier.

My thoughts are with Orlando

I don't normally like to write or talk abut certain things because people can be so very judgmental and I'm not the best with confrontation. By now most people should have hear about what happened in Orlando. 50 people are dead another 53 injured. And yes I said people I know they are part of the LGBT community but that should not matter, They are people who deserve to live as much as anyone else, to love and be happy. I have several friends who are LBGT and no I see them no differently from my other friends, in fact they are closer friends to me then others. It saddening that people can only see hate to others but it is there, it is always there.

Prejudice, hate it is always here and it always will be unfortunately. Be it part of human nature and well most is taught into us at such a young age how can it not be there?  I rarely discuss my own religious beliefs, since I... don't really have much of one. I'm not of any religion nor do I classify myself as atheist I'm just me. I've had my own judgment put on me due to this especially since I was born in a state who is strong in one type of religion and some have treated me different;y because of it. Region, who you love should not be seen as a lesser person, but it does and as I've said I do feel it always will. People have a hard time dealing with something different from them. Some of it is taught at a young age. In the past I always pointed to Star Trek the Undiscovered Country. Something that is pushed onto you for so long, seeing someone as something else even if they are a decent human being just part of a label you have a problem with brings bias.

Chancellor Gorkon: You don't trust me, do you?

 I don't blame you. If there is to be a brave new 

world, our generation is going to have the hardest time 

living in it. 

This ind of thing just makes me feel sick and sad. Sad for the victims affected and sick because I know nothing can change the fact that this kind of thing will stop.  Because it won't people will always hate, and there will always be bad people in the world. its just part of life all I can do is continue to be the person who I am and maybe not be so shy about posting all the parts of me. I know who I am even if it  mean others will have a problem with me, but for m friends who are a art of the LBGT community and do not hide who they are I should do the same right? I mean if people have issues with me for being me then I want them to say it so I can cut that person from my life and move on and be happy.