Is the week over yet?

What a week! and it is only Wednesday.  There have been some pretty bad thunderstorms so the temperature and humidity keep fluctualting so much that we are catching minor colds. 

Yesterday Angelica had a stomach emptying study and we were at a hospital that apparently hasn't dealt with children with her difficulties before.  I even told them that I didn't have much trust in them. 

We did finally get her new mattress though which has been a month long saga of them coming out, it not fitting and them taking it back to do modifications.  She had a very restful sleep (it is a Tempurpedic).

Then....today there was an accident just a couple blocks from here that killed a child waiting for the bus.  I knew the child had to go to my childrens school because that is the only elementary school that services this area.  Unfortunately, it was someone in my son, Christopher's first grade class.  I was very upset by the news.  Christopher does have a tendency to get very upset about things.  He is autistic and very sensitive.  He even got upset because he didn't get his flu vaccine (they were giving them out at school).  So, I will wait until the end of the day to see how he took the news.  The school did call and I gave them a heads up about it. 

On a good note, Angelica's school called yesterday and informed me that they are not administering the flu mist. I was upset when I got a notice that they were going to administer the mist at school and I thought it was negligent to do this in a school with so many immunocompromised children.  I told them what I knew of the mist and the fact that it sheds.  Well, apparently, after speaking to me they did some research, spoke to the health department and even called the CDC and after confirming the information I gave them they had come to the decision to only allow the injectable vaccine and none of the mist will be brought into the building.  YAY!!  Somebody listened!

Well, that is enough for now.

Starting out

Well, I haven't been on in awhile.  So much has happened.  We bought a house and moved from NC to FL.  Angelica loves the beach.  We love our new house.  It is open and pretty.  Very easy for Angelica to be a part of the family wherever we are in the house. 

There have been some issues such as the bathroom was not as easy to adapt as we thought.  Also, we severely downsized from our previous home so we are feeling squeezed up.

So, after about 5 months we took the plunge and purchased an empty lot across the street from the Gulf of Mexico.  I have never built a house but I am a control freak so this should be quite an adventure.

I haven't forgotten about the compensation program.  I am trying to meet people and network so I can eventually get something done.  Politics is often more about who you know than what you want done.

Now that this is a bit more generalized, I anticipate having a lot more to contribute.  I have a lot to share about Angelica's progress.  her life has changed quite a bit since we moved.  Bye for now~

I am finally getting back into the groove and will hopefullybe posting more regularly again. I really want to fix this screwed up court and vaccine system. if any of my faithful followers know how to help me reach the right people or know how to direct me to the right resources, I would really appreciate it.

I am going to put my two cents out there for those that care...lol...about the recent court decision regarding vaccines and autism. IT IS A JOKE mainly because THAT COURT IS A JOKE. They should be ashamed of themselves. I have never seen such a gross miscarriage of justice. I am tlaking mainly about the officials within that system acting as though they are truly looking out for the truth. I think that it is virtually impossible to convince those in that court to truly attribute anything to vaccines without having their backs to the wall.
OK, so now that the rant is over, let me talk about us.

Angelica now has two dislocated hips and we only have one more step between now and the surgery. That is because the procedure that they would like to perform is very drastic and seems barbaric to me so we are still going to try something else first.

I have been an emotional mess. I am glad that the supposed hard part is over and we have finally recieved the funds from her vaccine injury but it is almost bittersweet. The truth of the matter is that I will never have my baby back as she was and everyday is a constant reminder of what happened to her.

Then I have trouble dealing with the anger. I read newspaper and magazine articles that have blatant flasehoods such as vaccines pose no danger and there are only a few side effects and they are virtually harmless. Try telling me that...or Angelica.

We have been pondering a very tough decision and today it came very clear why my husband has not made a clear decision either way. We have been trying to decide whether to stay where we are or move to Florida. My husband is fearful of how hard it will be for me starting over in a new place with no friends, contacts, support, etc. I think I will be ok but who knows until it happens. I am very fearful. I do not really like where I am living but am fearful to change all that I know. We have never lived anywhere else with Angelica and don't know how to start all over with someone with her level of disabilities.

I have always wanted to live closer to the beach. This just fueled my ill feelings. If she had not been injured we would already be living there but every time it comes up I pass. I have very little trust in doctors and have had some (doctors) virtually ridicule me for thinking that vaccines injured her brain. There is a much smaller choice in providers there. I cannot find any kind of message board or other means of connectig with others there and I fear being isolated in a new place with unbearable burdens, in terms of all the medical care required.

I just don't know what to do and I need to decide soon.

I welcome any comments and opinions. I am sure I have thought through everything but there may be pearls of wisdom out there.

Well, it is time to resume my hectic life so I will be back in a day or so.

It has been a long time...

Well, it has been a long time. Mostly because I have been dealing with my own demons. All of this mess finally wrapped up and it was a ridiculous and time consuming process. The end result is that I am more angry than ever and am having a bit of trouble dealing with my pain and anger. Add that to the holidays and everyday life and it is not a good mix.

Angelica also had a surgery during that time. She had a VNS implanted which is a Vagus Nerve Stimulator. It will, hopefully, assist with controlling her siezures and at the very least allow her to come off of one of her siezure meds. It was a fairly easy procedure. Even after all that has occurred she is a fast healer and is very healthy.

Now all we need to do is get her dislocated hip corrected and we will be on the path to pain free wellness once again. I did take her for a second opinion. What a waste since I found out that he is in the same practice and there was no way in the world he was going to go against the original doctor. He was also not very nice.

We had contemplated a move to Florida. We were actually picking a house out and had a job and everything but I found out that there is only one specialist of each at the nearest children's hospital, which was two hours away. For most people this wouldn't be a problem but when a vaccine injury is involved you need to be choosy and ensure that you have an understanding doctor since so many doctors deny that these reactions even occur. I couldn't even secure a phone call/consult with the doctor and I tried. If he is that busy then my children would not get the attention they deserve. Unfortunately, Angelica is not my only special child. So I am in the neurologist office quite a bit and the last thing I need is a rushed and innattentive doctor. I was heartbroken and even cried. The only place Angelica is truly happy and relaxed is when we are at the beach and it was very important to me to live in the happiest place possible for her. That, too, made me angry. Even something as simple as a move ended up being so complicated and stressful and in the end the decision was made to stay where we are, with doctors that we trust.

I need to go for now but am redidcating myself to this. I know there are some that have been checking back in and I have greatly disappointed them and I am so sorry!

Well, I know it has been some time but my accounting project was a killer and I had to focus a lot of energy into that. Afetr working on that each day and playing with and cleaning up after the kids there just wasn't much time left. I have turned it in so will once again have time to dedicate to my blog.

Some great news, we are almost through the program! I am trying to keep from getting too excited because there always seems to be another roadblock.

I left off of my story at the beginning of this year so I am going to begin to blend what happened then and currently because it is just so convoluted that it seems like it will be easier for me to get it in writing that way.

At the beginning of this year I was so frustrated! It had been a year and a half since the Special Master decided in our favor and almost a year since the Life Care Planners (LCP) had been here to visit with our family. I think I explained how little time was actuaqlly spent with us but it still bothers me so I thought I would mention it again.

Well, I find out that they are still "negotiating". That term ended up being like a burr under a saddle. It almost pained me to hear it because I heard it alot. My first thought and question to the attorney was : I thought they were negotiating last year. What could possibly take so long. Also, I was told that there would be so many questions that I would be sick of being on the phone with the LCP and her office. But I haven't spoken to them but once or twice.

Now I am just getting irritated because I thought things were moving along and I am now well aware that this is a slow process but this is ridiculous. So I started to push. I kept calling my attorneys and my LCP. I am told that the governments LCP was taking awhile to submit her proposal or life care plan or whatever they were calling it. So finally, she submitted her side.

How ridicullous! This is when I figured out how ridiculous the system really was. One of the points of contention was a vehicle. I was told by both LCP's that we would never have to worry about transporting her to appointments again because they both were going to make sure that a vehicle would be put into the plan that would fit our whoel family so it would no longer be so burdensome. But in the plan was a minivan. The government LCP said that was all she needed since her caregiver (CNA, nurse, etc) would be able to transport her everywhere. Total disregard for the fact that we are a family and the fact that we do things together. We have never excluded Angelica. She has gone on every vacation we have been able to go on, even camping. Why would we all of a sudden start havign someone else be her main caregiver as though we aren't here? We aren't putting her into a group home. She is a part of our family. Also, which parents do not go to any appointments or therapy visits? Am I just supposed to give my under 10 child a kiss goodbye and see her when she gets back? NO! We are active parents with an active family who do things together. Before it became so difficult to transport, she even went grocery shopping with me.

Also, they refused to pay for mileage, which should be covered. Their reasoning was that they were giving her a vehicle but didn't need to pay any expenses related. Ummm....hello....would she even need this vehicle if we had not followed government issued protocol and allowed my child to be vaccinated, which ultimately led to her debilitating condition? So it stood to reason that the maintenance and mileage should be included. They weren't giving us a vehicle big enough for the family so this is just hers. We have no extra money to support an extra vehicle, especially one we wouldn't even be using. They didn't care.

They also have a sneaky way of not paying for much. As I looked over the life care plan I noticed that the government had zero dollars for most items. I now find out that they only pay for anything above and beyond insurance. They base it on current insurance and the government pretty much assumes that insurance covers everything. Our insurance has a maximum out of pocket of $5000 a year so the government was giving her $5000 then everything else will be 100% covered since we would have met our out of pocket maximum (hope that isn't too confusing). Problem is that they assume everything is covered by insurance, also they don't take into account what amounts actually go towards out of pocket maximum the way the insurance company does.

I was sickened by how much would not be covered, many of them big ticket items. Any reasonable thinking person knows that insurance does not cover everything and how hard it is to get payment for things that are covered.

So, I got angry. This is one of my little victories through this whole process. I still smile thinking about it. I called our insurance company and ask them to please help. I explain what the life care plan is all about and what the LCP for the government was trying to claim. I begged for their help since we were all aware that there were things that would be denied.

I was shot down over and over but I kept pushing, asking for different departments, someone higher up, anything. Finally someone offered to try to get the information I sought. I recieved a call later that day from the director of Blue Cross Blue Shield of North Carolina who was joined by a member of their legal team and the rep I spoke with earlier. I clearly explained that I was not asking for a guarantee of payment but I knew there had to be some inner office guide or company policies in place identifying which , equipment, services, etc. would be denied regardless of medical necessity.

Well, need to take care of the kiddos. I will try to get back on todau to pick back up. We are just getting to the good part. :)

Well, some headway is finally being made on her case but once again they are up to sneaky tactics.

I just want her to get her hip surgery so I am done fighting at this point. I will fight to change the program after this is done.

So, besides all of the things going on with Elizabeth, we finally had a diagnosis on two of my sons and they were both diagnosed on different levels of the autism spectrum.

I guess you could say we are a mess.

So we persevered through all of these issues and finally decided that we needed to move yet again and buy a house. Angelica needed a lot of space. She has so much equipment and needs room for therapy and needed easier entrance in and out of the house. Our rental had a lot of steps and I had to heft her up them daily.

Angelica was in school and she loved it. She rode the bus everyday with her siblings and was in the same school as them. I loved her class. She had an teachers aide who pretty much just took care of her. They went on field trips and she was treated like a typically developing child even though she, as well as her classmates were not. On her last day there they threw her a going away party complete with cake, ice cream, and gifts.

I guess that school gave me some high expectations so when I visited her new school I was not only disappointed, I was upset.

It did not seem like a school. It was not at a school. It was a seperate facility that the county contracted through to provide services for children (and some adults) like Angelica.

In reality, it was a nursing home for children. They called it a day facility. I called it hiding the broken. I also did not feel they recieved adequate care.

But, I allowed myself to be convinced to give it a try.

WHAT A MISTAKE!

When was I going to learn to listen to my first instincts?

They were great......for about a month. I think this is when they thought I was going to let my guard down, when in truth this is when I really started to pay attention.

I began to get uneasy. There have always been little things but one of my biggest concerns was about food. She was here because the schools contracted for her to be here but they had no lunch program which meant that I had to provide all of food which was more difficult because they didn't want anything that had to be heated and I had to pay for it even though she was eligible for free lunch.

I began to suspect that she wasn't being given her lunch.

Also, I didn't feel comfortable with the amount of attention she recieved. The ratio was five students to two teachers, however whenever I stopped in (I liked to come in unannounced to check on her since she was always so unhappy) there was never more than one staff member in the room. Also, all of the other children were autistic and demanded much more attention than my sweet non-verbal Angelica.

Well, I need to get back to real life for a bit. There was a bunch going on at the same time at this point so I will post more on her school issue then give more info on what was going on with the compensation program.

Well, another busy week has passed. Angelica is all better but she has always been string and healthy. I cannot believe it is almost October! What craziness. How the times fly.



I did call my local congressman but you apparently have to be a big donor to actually reach anyone and now that our country's financial core seems to be on shaky ground, I feel as though it is a lost cause. But not to me. I will keep trying and persevering.



Well, back to where I left off.



Many changes happened over the years. We ended up moving, twice. I had two more children, which brought us up to ten. Angelica went through some very rough patches. She continuously remained sick and I pushed for a swallow study to see if she was eating well. Up until this point she did eat by mouth, mostly liquid or pureed foods but she ate.



They conducted the swallow study and immediately they put a stop to it. She was silently aspirating. The liquids were going straight into her lungs and she didn't cough, spit up, nothing, gave no sign that it wasn't going the right direction. The decision was made to insert a feeding tube into her stomach so she could maintain and gain weight.

That was one of the hardest things for me to come to grips with. Up until that point, I knew she had disabilities and would never be the same as the others but it didn't seem real somehow but when she had to have a tube placed to have her food go directly into her sstomach, I lost it. It hit me full force just how many constant struggles my little girl may encounter.

So after it was in, she did start gaining weight again and eventually we began feeding her by mouth. Food but no liquid. The food seemed to go the right way just not the liquid.



So, she had her tube put in and actually grew through three clothing sizes in about 3 months. It was crazy! All of a sudden nothing fit her! I was so happy! She was attempting to use a walker, with assistance but I didn't mind holding her up. She was trying to use her legs to walk.



Then we found out that her hip was dislocated. It wasn't causing her any pain but would eventually need to be corrected if we did not want to chance it being painful in the future.



Around this same time, we found some strange symptoms in one of our older children, Elizabeth. She had what I thought was a bruise on her foot, like her brother may have stepped on it or she had dropped something on it. Then it went to the other foot. It slowly, over the next few months, began to creep up her calves. The docs said to keep an eye on it. I was fine with that until she complained that her foot was numb, the same one that the rash started on. By the time we went back to see the ped about it, she was numb in both feet and part of her leg.



After several trips to specialists and a biopsy, they ofund that it was cutaneous vasculitis. I will not bore you with the tedious details but they still don't know (to this day) what is really going on with her or how it will eventually evolve.



Well, I am going to break off here. I have to get back to my school work which is not a walk in the park. It is hard!

I am so glad to have this as an outlet. I have had all of this just crammed in my head and it is nice to get it out.