Trying to keep it together

Some days are easier than others. I have been really sick this week. Most likely stress induced. I've had two migraines in 3 days. Not fun at all!!! I am trying so hard but feel completely inadequate. I hope this feeling goes away. I want to be strong for Grace and all my kids. They think they have come up with a diagnosis or multiple diagnosis really. I am struggling with there being more diagnosis then she has names. That just seems like more than any child or person really needs. I am just feeling really down today. I don't need to bring everyone else down.

On the bright side I am going to go get Grace to day for a 2 night visit. She came last weekend and she had a great visit. Last weekends good visit is making all of us looking forward to this visit even more. We are learning new tools to help Grace before she gets so upset that she completely blows up. Last weekend was the 3 week mark from her last major blow up. For the last six months she has had a blow up every three weeks like clock work. The fact that we made it past last week with out any major problems is a major victory. Doesn't mean she is ready to come home, but it defiantly gives us a lot of hope for the future. Here is hoping for the same for this visit.

Not to much else going on right now. I am dreading the next couple of months. Next week is Grace's 11th birthday. Then we go into the Holiday season. I am not sure how to handle the holidays with out her here. I want to make everything as nice and as normal as possible for Brother and Sister. It just will be weird with out all of my kids together. I am sure it will be much more difficult for her.

We are still trying to raise funds for Grace's care. Please if you are able, donate. Thanks for all of the love and support.

Getting nowhere... FAST

We tried to appeal the denial today. That didn't work. It is so ridiculous that the insurance can do this. When the insurance company called to tell us that we were still denied they asked do you want to have a level 2 appeal? Well let me see? YES!!!! I will never stop fighting. This is just so completely frustrating. I can see why there are so many people out there fighting mental illness that just go completely crazy. If you aren't crazy to start you will  be by the time you're done dealing with the insurance company. Hopefully tomorrow Grace's case will go to someone who can help.

We know our time is limited with the insurance paying for Grace's care. We are so grateful for the time they have paid. Unfortunately it is not enough time. The time has come to get creative. We have set up a fund raiser on gofundme.com. In two days we have raised $540.00. We feel so completely loved and blessed. I will add a link in case anyone is interested or able to help. In addition to that I am also hosting a origami owl party. The consultant is a good friend and is going to donate all of her commission to Grace. What a sweet thing for her to do. Again I will post a link for her website. Just be sure if you purchase anything that at checkout in the drop down box you select Grace's fundraiser. Origami owl has some really cute jewelry. I actually ordered a necklace that is a dog tag that says Grace. I can't wait to get it.

http://www.gofundme.com/4ppzx4

http://owlloveyoualways.origamiowl.com/

In addition to these two fund raisers we are going to do a community fund raiser. We are planning a dinner and action in November. We are just starting to plan. We have been working on this since Tuesday and already have a venue to host the dinner as well as donations for the action. Hilton has even donated a free nights stay to auction off. Also any free gifts earned from the Origami Owl party will go into the auction as well. We are hoping for lots of community support. If you are interested in helping us plan this event please contact me. We need lots of help as well as donations to sell at the auction.

I have to say again how loved and blessed we have felt this week. Our blog hits have gone through the roof. I am so grateful the Grace's story is getting out there. I hope we can bring more awareness to these sensitive issues.

Denied!!!

Grace is officially denied! Just as I thought the insurance has stopped covering today. The Doctor from the insurance company talked to Grace's doctor. After a very long conversation the Doctor from the insurance agreed that Grace needs long term care but says they will not pay for it. It is so completely frustrating. They know she needs help that she can only get at this facility and yet they will not pay. Our insurance has an unlimited benefit for mental health. What a joke, unlimited until they decide they are done I guess. 

We are so overwhelmed by this situation. Talking to Grace this past weekend she even said that she doesn't feel ready to come home. She knows that she needs the help. She wants to get better so that she can come home. My biggest fear is if we have to bring her home that she will be home for a short time before she blows up again and ends up back at UNI. Bouncing her around between treatment centers will slow and back slide her progress. 

I am so desperate. I'd cry, but then I wouldn't get anything done at all. So I just write and share my feelings will people who are reading this blog. LAst month because I was away I didn't post anything. We had almost 500 hits for the whole month. Today alone we have had over 850. SO please keep doing what you are doing. Please share the blog, repost on Facebook, pinterest, twitter and any where else that you can. I feel like the more Grace's story is heard that we will be able to get her the help she deserves. 

I read a story on CNN today about a boy who was able to sneak onto a flight to Las Vegas. In the story the Dad was pleading for help for his son. He said that his family has tried to get the boys bad behavior under control. I felt for this man. I know what it feels like to feel helpless while your child is out of contriol. What made me the most sad was everyone in the comments totally ripping this family and blaming the parents. This was my response. 

I have a child with behavior problems and I have done everything I can for her. My child is in a residential treatment center and we are trying to get her help.  My husband has a good job with insurance. We were promised an unlimited Mental health benefit. My child is nowhere near ready to come home, but the insurance has decided she is no longer their problem, and has quit paying. If we can't find a way to pay then I have no choice but to bring her home. Her care is over $10,000 a month. Tell me how any one can pay for that? I have two other children who are not acting out, so I don't think I am a bad parent. I have a child with special needs and no way to help her. Don't judge these parents. They are desperate and trying their best to get help. The dad is right, if he spanks his child then everyone will judge him and he will be in trouble. What is this family suppose to do?  

I want to share our story because more people need to understand that mental illness is an illness. Behavior problems often fall into this category. Don't judge others, try to help. 

Please keep praying for our Grace!!!

I'm Back

Sorry I've been MIA. I haven't forgotten to blog I promise. I went away for a few weeks. Some much need rest and relaxation.

The past almost two months have been very much more of the same. Fighting to keep Grace at Hogwarts. At the same time we are seeing a blow up every three weeks with out fail. You would think this would make the insurance say "well lets get past three weeks before we even think of sending her home". Nope, every time just before we know she is going to blow up the insurance tries to stop paying. It is so frustrating. Every time I feel like I can't fight this battle any longer someone helps me find a way to keep going. I am truly very blessed with an amazing support system in my life. I thank all of you for the strength that you give me. Just knowing that people care enough to read this blog is amazing to me.

While I was away on my trip the insurance company quit paying for Grace's care. Not only did they quit paying, they waited to tell us until 6 days later. We couldn't believe that they could do this, but they did. We had been blessed with some finical assistance from family and friends so we made a payment to Hogwarts. At the same time we appealed the denial. Amazingly we won the appeal. From what we have been told, that almost never happens. Thankfully we could keep going. The crazy thing was they denied coverage 5 days after Grace had a massive melt down. It was the worst melt down any of us had seen and we all thought there was no way the insurance could deny coverage after that. Wrong again. Good thing both Dad and I are good at fighting. Now as we are approaching the three week mark again they are telling us this is the end. This system is so broken. In the news everyday you see stories of people who completely lose it and do something that makes us go "what were they thinking" or "Why were they even able to do that"? The answer is because that mental health is so misunderstood. Its tabo and no one wants to talk about it, let alone fix it. Everyday people who are a danger to them selves or to others are released from institutions because it is so expensive and an insurance company can decide their fate. Many people choose to not take their medications and get judged for that. What so many people don't understand is that many of these people are not diagnosed early enough. We are truly very blessed because we are trying to help Grace early on with all of this. The doctor and therapist have said that early intervention is important for Grace to have a happy and successful life. So we fight, and we will keep fighting.

Grace's team is trying to find the right balance of medication and therapy to help Grace. However this is a long and very difficult process. Also a lot of trial and error. They have to constantly watch Grace's levels through blood draws. I can't imagine having her at home and taking her to therapy 3 times a week, and to several doctor's appointments, as well as taking care of everything else in day to day life. Not only that, but Grace is very hard to hold down when she is having a melt down. I wonder if the insurance company will pay for someone to be here with us to help us when she is blowing up? Simply we can't do this on our own right now. The diagnosis that are being discussed right now are Autism, Bi Polar, TBI, and ADHD. Any one of these alone is a lot to handle, but all of these together is too much.

At this point we feel like we are running out of options. We feel like it is not safe to bring Grace home, and we can't afford to keep Grace at Hogwarts. The monthly cost is so scary. I wanted to cancel my trip that i just went on, but it was already paid for before any of this started. Dad and my therapist and many of you told me and supported me in my time away. I am glad I went and I had an amazing time. Really the time of my life. I feel as if I can face all of my reality once again. At this point we feel our only option is to ask for help. We are starting to fund raise to try and keep Grace at Hogwarts as long as the doctors feel she needs this level of care. I will be honest, its about $10,000 per month for her care. We have set up an account on gofundme.com we are also starting to plan a dinner and action event. (more details to come)

We will fight to do what ever we can to Save Grace.

http://www.gofundme.com/4ppzx4