Stop this ride I want to get off...

This roller coaster is more then I feel like I can handle today. I am fighting as hard as I can, but how long can I keep going like this???

So last Friday Grace had her neuro testing done. Now we sit and wait and wait and wait for the results to come back. I talked to the Doctor's assistant today and clarified that Grace dose for sure have a ABI. It is diagnosed for sure. Grace falls into the mild category. Don't let the mild fool you, it is still pretty serious. I am hoping that having an actually diagnosis will help us fight the insurance company.

We found out that Grace is covered for the next week at Hogwarts. However we do know that the insurance is getting very anxious to get her out. Here is my problem. Grace has done really well this past week. That would seem like good news right? Well the insurance thinks one good week means that she is all better and ready to go home. WRONG!!!! Look at the past several months. She is good for a week or two and then completely crashes again. I have started calling all over to several different agencies to look for help. I have called the county and the state. My biggest concern is how do I bring Grace home when I don't feel it is safe to have her here. She doesn't hit at Hogwarts because she knows she will be put in a small locked room by her self. I can't do that at home. Its child abuse if I do it!!! Go figure. Also if she comes home and hurts her brother or sister, then I am in trouble for not protecting them. WHAT AM I SUPPOSE TO DO???? I feel like I am being set up to fail. I am so ready to scream and cry. I want her home, but not until she has had time to get the help she needs. I really feel like I am ranting today. I am so emotionally and physically exhausted from telling Grace's story over and over and over again. It is not getting me anywhere!!! I just hope that someday the right person hears this and has the right answer for all of this. I am just a Mom trying to save my child.

On the plus side we are going to bring Grace home for two nights. This is to see maybe she is more ready than we think she is. We'll see. I pick her up tomorrow night and we take her back on Saturday morning. Here's hoping we all survive. The good thing is, if we have any problems we just take her back to Hogwarts. At least I know there is help there if I need it. I am really excited to have her home. I hope that it goes well. I think we all need a little hope right now. Please pray for us this weekend!!! One of two things will come from this weekend, One she will do great and we will look forward to bringing her home, or Two it will be awful and insurance will agree to keep her at Hogwarts. I guess we don't have much to loose!!!

Sorry for the ranting and rambling. I am just so drained today.

Back on track

Today was a good day. I feel like we are back on track with Grace. Her therapist is back from vacation.  I told him he can't go on vacation again. He was gone one week and our whole world just about fell apart. Back one day though and he is back on top of things. I have been trying to schedule the neuropsychological testing for Grace and that has been so difficult. Everyone is scheduled 4 to 6 months out. When I was talking to the insurance company they asked why I was the one doing it. I told them that the staff at Hogwarts told me that I had to do it. She started to wonder why they were paying Hogwarts if I was doing it? She called the school and they got it scheduled for this Friday. I could not believe that they can do it that fast. Happy Day!!!! This should be very helpful in getting the full picture of what we need to do to help Grace. This testing from what I understand is very expensive and insurance usually won't pay for it that easily. Given the option though of paying for residential treatment vs. testing it was a simple choice for them. I was also happy to hear that we won't have to wait weeks for the results. They will have the results by the first part of next week. Finally everything is coming together. I think I am going to sleep much better tonight!!!!

Happy Day!!!

I am feeling very hopeful and happy today. It is a really nice feeling I have to say.

Sunday we were able to go and visit Grace again. We took a completely different approach to this visit. I decided that it was going to be a fun visit. Grace had mentioned that she needed some chap stick and some undershirts. I had bought those to take to her. I decided to get her a few fun things as well. I had talked to a staff member a while back and she mentioned that the girls were really in to word searches right now. I bought Grace several word search books as well as a suduko book, a coloring book, crayons, and markers. My friend came to visit and had bought a toy for Brother and Sister so she asked if she could get Grace another coloring book for me to take with the other things. It was so fun to see Grace's eye light up. She was so happy she said just to get the visit, but the stuff was a really nice bonus. Our visit was actually so fun. Grace was her normal happy self. I hadn't seen her this relaxed and happy in a very long time. We had fun playing a game together and painting her nails. We took so fun pictures together and just laughed as a family. I can't tell you how beautiful it really was. I love the days like Sunday. I want and hope for more of them.

As great as Sunday was that is not what is making me happy today. Yesterday was a crazy busy day filled with many phone calls to many different people. We are trying to get our support system in place so that we can be ready for the day that Grace can come home. I am so excited because between all the people we have talked to we are coming up with a Great plan. My phone calls were to set up her testing, the school district, Home therapy groups, and dance studios. So her is our very basic plan for now. The school district is concerned that Grace coming home and acclimating back to life and school may be too much for her to handle all at once. I have to say that I see their point. So it has been decided that Grace will do 6th grade online from home. This will give us flexibility to schedule her many therapy and doctors appointments. Also if Grace is having a bad morning or a melt down I don't have to stress that she will miss school. The school district will still oversee her studies and do all of the lesson planning. Really that seems so perfect. We are also going to put Grace in a dance class. We haven't decided what style yet, hence all the phone calls. I am starting to feel like I can actually do this. It just takes time to let everything sink in.

The most amazing thing through all of this has been my own research. I have been wondering about the ABI. What does it mean? What is the difference between ABI* and TBI**? What are the symptoms between the two? I found a website that was a great help. Really when I read the site I thought they had just completely described my child. The page a fact sheet about Acquired Brain Injures in Children. There are four main areas of concern. Sensory and Motor, Cognitive, Language and Communication, and Language and Communication. Here is the paragraph that describes Grace perfectly...

Social, behavioural and emotional

A child may experience difficulties relating to peers and siblings and have difficulty joining group activities. They may appear very demanding of their parents' or teachers' attention and have difficulty following rules and instructions. A range of behavioural problems may arise after acquired brain injury, which may include: depressed or anxious mood, hyperactivity, distractibility, impulsivity, poor judgment, reduced control of anger and frustration, mood swings, aggression, sleep disturbance, and poor motivation and initiation. When social, behavioural and emotional problems are recognised early in recovery, a number of rehabilitation strategies may be employed in the school and home environment.

http://synapse.org.au/get-the-facts/acquired-brain-injury-in-children-fact-sheet.aspx 

I have called and read the article to Grace's therapist and her Pediatrician today and both said, you just described Grace. It is amazing. This helps us understand the why. What we will still have to work on is how to help her overcome it. I know I haven't found a miracle cure, but understanding goes a long way. I am hopeful that this will mean less medication for Grace. I am not a fan of medication. I know there is a time and a place for it. I just want to try everything to avoid it. Here is hoping that we are able to go down a better path to help Grace. 

*ABI- Acquired Brain Injury
**TBI- Traumatic Brain Injury
This article explains the difference between the two injuries.http://www.biausa.org/FAQRetrieve.aspx?ID=43913

Not Ready!!!!

Wow, things have been really rough. Grace  has really been struggling. We went to visit last weekend and she had been in trouble at Hogwarts. When they brought her out to visit with us she was wearing some awful sweats and a t-shirt. I asked why she was wearing these awful clothes? I was told she was on restriction and while on restriction she can't wear her own clothes. Grace got really rude with the staff member who brought her out to me. I told her if she was going to talk to her like that that she could just stay in the awful clothes. She apologized to the staff member, they did let her change into her clothes for our visit after she changed her attitude.
 This last week I couldn't make the drive down for family therapy. We did a phone conference instead. I was already a little nervous about therapy because Grace's regular therapist was on vacation. The call started out just with some small talk. Then Grace started to complain about the other girls in her group. She got really worked up very quickly about how awful they all are. Then she started to say how much she hated all of them. I tried to distract her and move to another subject, but she wanted to talk about coming home instead. Grace then got completely stuck on talking about when she would get to come home. I told her that we needed to talk about other things before we would be ready to talk about her coming home. She just lost it and shut down. It was so hard because I couldn't see her and read her body language. Finally I said that I felt that it was best for me to hang up. She just started to scream and beg for me not to hang up. That is when you know that you have to anyway. I just hate seeing or hearing her like this.
 After our disaster of a phone call I got a call from another therapist at Hogwarts. I was informed that insurance had denied more time and we needed to be prepared to pick up Grace by the end of the day!!!! I was shocked!!! I really was not excited to go and bring her home when the last thing I heard from her was screaming. I lost it and just started to cry. How could this be happening? I started calling everyone from the school to the insurance company. I finally after tons of phone calls found the right person to talk to and they were able to authorize another day while they figured out what was happening. So in the end what I learned was that the therapist should have never called me and said insurance hadn't come through and he should never had said I was going to have to pick her up. He jumped the gun. What was really happening was the insurance company need some clarification and they place a pending note on her file. What needed to happen was Grace's doctor needed to talk to the doctor at the insurance company. What a mess. I talk to the insurance company today and was told that everything is fine and that Grace is covered through next Tuesday for sure. At that point they need another report to determine if she is still meeting medical necessity. So what is medical necessity? The insurance company wants to know can Grace's care be managed at a lower level? Is she a danger to herself or to others? It is a very small window of what they want in order to justify keeping her there. What I am learning is this means the insurance is getting very anxious to get Grace out of there. I talked with Grace's doctor just last week and the doctor told me that they think Grace needs about 9-12 months of care at Hogwarts. Well obviously the school and insurance company are not seeing eye to eye. Now it feels like we need a miracle. I called the billing office just to see how much self pay would be. Lets just say that one month at a discounted rate would buy a nice used car. That is not going to be an option. At this point I have decided that I need to work with Hogwarts to make the most of the time we have left. In the mean time I have to call and set up tons of meetings for once Grace is released. I have to have a physiologist set up and ready to see here, try to get in home therapy set up, and call the school district to get an IEP for her. Not to mention we are still trying to set up the neuropsychological testing. This is such a crazy system to navigate. The insurance person I spoke to today asked me to please write a book about how to do all of this. Who knows maybe I will? In the mean time I will keep pushing to get the best help I can for my Grace.
 Basically what I am figuring at this point is yes Grace will need long term care, however not necessarily from a long term treatment facility. Her care at some point will be managed by us from home. This really scares me at this point. Also it was suggested that if Grace does have a ABI then we need to file for disability for her. Having her on disability would help us with the co pays for her care as well as resources to help us avoid hospital stays. It's one more thing to do, but it may be the most important. Baby steps to figuring this all out.

Visit to the Doctor

Three months ago before Grace went into the hospital the first time her therapist had an idea that maybe Grace has a traumatic brain injury(TBI). This thought came because she just doesn't seem to know what her triggers are. The thought came that because she has struggled with Asthma for so long that there could have been time with out oxygen. Lack of oxygen can cause a TBI, who knew??? Well when her therapist presented this idea I remembered that Grace had an accident when she was one year old. When Grace was one she tried to climb into Brother's booster seat at our kitchen table. Her foot slipped and as she started to fall the booster seat caught her at her neck and the back of her head got caught by the back of the table. It completely asphyxiated Grace. I was in the bathroom when this happened. I found her blue with purple lips and immediately used my CPR training to try to get her to breath again. I was able to get her to take a breath but I couldn't get her to wake up and her breathing was not normal at all. I called 911 and waited for an ambulance. Grace was transported to the ER and was breathing and awake by the time we got there. They admitted Grace to the PICU because she was still very lethargic. After a few hours in the PICU she perked up and started to play. They decided at that point to move her to the pediatric unit for a night of observation. At the time of the accident the doctors warned us that there was no way of knowing if there would be any long term affects from the lack of oxygen. At the time we were just grateful to have our little girl still breathing. Honestly I was grateful to not be planning a funeral. It was really that bad. I refer to this day as the worst day of my mommy life. When I think about it I still tear up. Once I shared this accident with Grace's therapist she said we need to see a neurologist and soon. I called our pediatrician and he agreed that Grace needed to be seen. He made a ton of phone calls and found the bast doctor for Grace to been seen by. As Grace was admitted and working with the first hospital we told them what was going on and they dismissed our concerns. We just kept pushing forward and looking for ward to this appointment. We finally saw the Doctor last week. (I know it took a long time to blog about it!!)

So the thoughts from the doctor were not at all what I was expecting. I have to say first off that I loved the doctor. She was amazing with Grace and so attentive to all of my concerns. She asked a ton of questions not only about the accident but about other aspects of Grace's life. She asked a lot of questions about Grace's birth and she thinks there were some issues from her birth as well. When Grace was born almost 4 weeks early and she was in distress for the two hours before I delivered her. When she was delivered the umbilical cord was wrapped around her neck three times and her body once more. She was not doing very well and need help to breath. The respiratory team was called in and had to work on her for an hour. The doctor thought that this was a significant event as well. Between these two events as well as the breathing issues that came from having asthma that there is something going on in her brain. However she doesn't feel that it is a TBI. She thinks Grace has something called Acquired Brain Injury (ABI). I am not to sure how different this is from TBI, still have lots to figure out. One of our problems with Grace is that she gets what we call stuck on a topic and she can't focus on anything else for a long time. Usually a few hours. The doctor said that is very typical of an ABI. So now where do we go from here? The doctor has said that we need to have a Neuropsychological evaluation done on her. The testing will tell us where her strengths and her weaknesses are. Once we know all of this we can teach her to use her strengths to overcome her weaknesses. As with anything though it is going to take time to get the testing scheduled. That is my next mountain to climb.