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.

I just have to start out by saying that exposing myself like this is the hardest thing I think I have had to do in a long time. I am an extremely private person. I am aware that I am opening myself up to a lot of criticism for many of my choices and actions. I hate that the most because that typre of criticism has led me to severely limit my contact with too many others as well as my children. I rarely take them all somewhere unless it is like a family vacation. A trip to the grocery store can become unnerving. The biggest thing is we don't really fit the big family stereotype which draws even more attention.

I just had to get that off my chest because I love my family very much and have done much to protect them. But I get tired of going to the store (like I did today) and having strangers apologize to me for having soooo many kids when I only have three of them with me. Boy, if they even knew that I really had eleven.

Also, Angelica is sick and I hate it because there really is only so much I can do to help her. But I do all that I can. She does have a CNA who comes in M-F to help with her for eight hours since I am out a lot to other doctor appointments.

I think Angelica is finally on the mend because I have been working hard at getting her well. I try to achieve as much as possible as naturally as possible. I think too many meds would actually further weaken her immune system and I think this is why she so rarely gets sick and when she does, she recovers fairly quickly. I had a vaporizr going all day and night to help clear her congestion and it seems to be doing the trick.

Also, Elizabeth was home from school because she was sick. She is immuno compromised so she catches everything. She was homebound from school last year but we are going to battle it out his year. She is in fifth grade so the last year before middle school and she just desperately wants to be normal.

I think sometime soon I will "introduce" everyone to my family. They are all so unique and special in their own way.

Well, when I left off we had just begun our wait on this ridiculous process.....

Well, I guess I should start by saying that my mommy brain won out yesterday so I need to make a correction. Christopher was my eighth child not my ninth. I guess I was having a moment.

I would periodically check in with the attorney but all I would hear is that they have regular status conferences and they will call as soon as something happens. They did say that they hired an expert to review the medical records in order to give an opinion to the court about her her illness and what caused it. The DOJ (Department of Justice) was also having their expert to dispute our expert.

But I thought this was a no fault program.....hmmmmmm...my first indication that this may not be as simple as I was told.

It would be about three years before we had the experts report in hand and it ended up having to go to hearing.

In this process, the Special Master (who is the judge in this program) has two choices after reviewing the experts reports and all other evidence.

They can concede, which means that they aren't going to fight it. They are basically saying that the symptoms seem to follow those on the vaccine injury table and even if they aren't 100% sure the benefit of doubt goes to the plaintiff (that would be us) and it is all done. We all thought this is what would happen in our case because even our doctors agreed (one even submitted a letter for evidence) that it was the vaccines, wihch usually doesn't happen.

The other option is to take the issue to hearing and have all the evidence submitted and allow the attorneys to fight it out.

Once again, I am wondering why the fight? It is a no fault system right?

Well, the Special Master decided it should go to hearing, which we all thought was bogus (that is much nicer than what I usually say) but the control is all in their hands.

As it turns out, the DOJ's attorney and expert were really fighting it. Saying that it wasn't the vaccine that caused the seizures, it was the fever.

Um hello! She didn't have a fever until three days after her vaccine. Even her ped records show that. This still makes me want to SCREAM!!!!

This is not a no fault system!!! They are trying to blamae me and say she was sick when she recieved the vaccines.

NO SHE WASN"T!!

I wanted to say:

Repeat after me: She did not have a fever until after she stopped breathing and started seizing.

Our attorney was very upset. They were just making things up, seemingly, out of thin air. They couldn't dispute that the symptoms were similar to those listed on the vaccine table but they could try to manipulate the facts.

Once again, I think-this is not the way this program is intended to operate. I am sick of how unfairly this program operates but there is nothing you can do, nobody you can complain to, nobody cares! I did try to speak to my representatives at one point but was rather impolitely brushed off.

That is why I am trying to gather more attention first.

Many voices speak more loudly that one.

Well, I am going to go for now. Tomorrow I will pick back up and fill in our family story as well as Angelica's for that time period.

Bye!

Oh man! I have been so busy. I am currently in school and class just started back last week so it has taken me a few days to get back into the groove. My work load is a doozy right now. But I will be able to juggle. It will just take a little time and then it will be time for my new classes to start. Plus I have been sick and the kids have been sick.

Unfortunatelt, Angelica is sick, too. It is really hard on me to see her sick. She can't even really cough well then it all builds up in her throat. I am so scared that she is going to choke one day. It is terrifying!

Also, on a current front, I found some interesting statistics about the VCP. It is obvious frmo these statistics that the Program is not operating as intended and the reform bill isn't closed, it is just stalled. I really need to garner a lot of attention on this issue. I have emailed the Chairperson of the Committee on Government Reform, who originally sponsored the bill.

Please, please, forward this blog to anyone and everyone who may be interested or just wants to help us get the government program on the right track. It is hard, this early in my story to understand the magnitude of wrongdoing being perpetrated on families this early in my story but it will all come out and become very clear. The government is constantly backing and requiring new vaccines but nothing is being done to help those, child or adult, who have been injured, or even killed by vaccine reactions. They tell you that for health and safety all must have these vaccines but when an injury occurs they make you feel as though you did something wrong or that surely your child (or yourself, if an adult) are defective. There is a huge surplus in the fund due to the delays and loopholes they find to prevent and/or delay payment. So, if you guys could help me spread the word and gather interest, please do. Pass on the link. I would be more than happy to email back and forth with those interested in helping.

Well, back to the story...

Well, I learned as much as I could about the Vaccine Compensation Program (VCP) and learned that while I could get any attorney or even file myself, it would be in my best interest to obtain the serices of an attorney that specializes in the VCP in order to have it go through as smoothly as possible.

Little did I know that the government makes it as difficult as possible regardless. (Boy do I wish I had smilies here...I would have real mean one up right now)

So after searching for a bit, I found one I was comfortable with and seemed to be very knowledgable in the program. They have been involved since the programs inception. They were very nice and explained what I needed to do.

Of course they would have to go over the records but it seemed, from my accounting of events, that it would be no problem. Her injuries followed the vaccine injury chart closely.

They sent me all the paperwork and there was a lot of it! I had to submit all info on myself and her. Every OB, every hospital, all doctors seen, even in the hospital. There were a ton of release forms. They had to request all of her records both before and after her reaction.

The case did seem to just stop for awhile (like over a year) while records were requested, which we had to pay for. Finally I got fed up and I had an aquaintance that was still a member of the Bar in DC and Virginia. She told me who to call and what to ask and she began making phone calls to her contacts as well.

Boy, did that start a storm. Apparently we touched a nerve somewhere. Next thing you know my attorney was calling regularly and we were finally getting the last of the records submetted and officially filed.

This was in 2002.

Thus began the true journey because now the case was official and in the system. Supposedly there will be deadlines. Our attorney did say, after looking at the records, that it should be a slam dunk. My daughter had a reaction that virtually read off of the vaccine injury table. Both the timeline and the actual injury. When I read the vaccine injury table the first time, I actually gasped! It could have been written about my daughter.

Meanwhile my daughter and my family were growing and thriving.

Angelica went through a couple of years where she was sick a lot and since I was told how delicate her immune system would be, I had her in the doctor sometimes more than once a week. She did suffer through RSV several more times and pneumonia along with other illnesses. So much so that I learned to recognize the signs and treat at home as much as possible because she seemed to pick up more from the doctors office than we started with.

Our ped is the best and she helped as much as possible. I could call at anytime and speak directly with a nurse who would speak to the ped and help me as much as possible and advise me of when to bring her into the office.

Our family was also growing. In 2002 we had our ninth child. I felt a lot of stress during the pregnancy. I had a nervous breaksown, so to speak, shortly after Angelica was released from the rehab hospital.

I could not focus. I was always fearful when I went to work that I would never see her again. I was promoted. This was something I had worked so hard for. I finally pushed through all the prejudice and bias and achieved part one of my goals.

The problem was that I was not ready to put it first. All of a sudden life seemed so much more precious to me.

So, after just a couple of months, I talked to my superiors and explained how much I loved my job but I would either need ot step down or resign. They did not want me to resign but they would allow me to step down. Funny thing was that I was expected to perform the same duties but for less pay because the perosn that was in line to take my place was not realy ready. In fact, he just wanted a pay raise and he actually mad emy job so much harder until I did step down. He also amde some crazy stipulations which put me in a bad position and ultimately one of my direct supervisors kept constantly reminding me that the store was running so poorly because I stepped down and I didn't have to make the choice that I did.

When I found out I was pregnant with #9 all the feeling from Angelica's issues came rushing over me and I could not deal.

I could not imagine having to go to work and relive the fears constantly that another child may end up like her.

So, I began job hunting.

I found somehting I was interesting and that I would love and it had regular 8-4, M-F hours. I could have a real life and enjoy my time with the kids. I have never ever, since I started working at 15, had weekends off.

But it was a $11,000 pay cut annually. OUCH!!!

But we decided we could tighten things up and make it work.

Then just 5 months after I started, regardless of the fact that I was the second one to pass out of training class and my goals were exceeded, I was laid off along with a couple hundred others. I friend who did not lose her position that I was cut solely because I was pregnant and not a guarantee to return anyway. But I loved this job!

So, now I was seven months pregnant and for the first time ever, had to file unemployment. This actually worked because I could not find a job anyway and I did try. As soon as I got to the interview, they looked at my huge belly and I knew it was over.

So between the stress of having another baby after having one so injured and the devastation of a job loss I began retaining a ton of water. I did everything they advised but I really think the stress did not help. I ended up having really high blood pressure and having to be quickly induced.

But the peds and I were on the same page and we all wanted to prevent another reaction. He was given the same vaxes as Angelica, minus the Pertussis component.

So now her case is on its way and we just have to wait........and wait.......and wait.......and wait........

I will get back tomorrow and continue with the story.

Once again, I plead with all of you for your help in this cause. You have my permission to share and spread this link anywhere and everywhere you can.

Thank you!!!

Trying to move on...

We switched peds and it was the best thing ever. She had not a doubt what happened to Angelica. She did admit to me that when she put Angelica in the ambulance that night ot transfer that she never expected to see her again. She never thought she would be able to pull through. I knew she was pretty bad off when we transferred but I had no idea it was that bad.

We quickly came up to her vaccines once again and obviously I was very nervous but there were several factors leading to the decision to continue vaxing. I really didn't know it was a choice. It was certainly never presented as a choice. It was always made out to be as though they were mandatory. They weren't giving her the Pertussis vaccine so I figured it would be OK. Also, I had seven children. Not many people have large families and there is a llot of negativity towards them. Thougts that you can't care for that many and other stupid things. Also, DSS was still following us after we got out of the hospital. All I needed was for them to have something to hold against me. And lastly, I really had no support in case we did decide to buck the system.

So, I was a wreck. I had learned that the most dangerous window for a reaction is 72 hours (notice I said most dangerous window-later reactions are possible as I learned later) so I was crazy with worry and after she got them I could not sleep and I think she was in my arms for almost a week. But all was well. We weathered a storm and like after a hurricane, we were badly damaged but we will move on rebuild. In this case we needed to rebuild everything, her brain, her development, hers and our lives.

We also, finally, completed and got the results from the last blood test the neuro wanted to rule out any other disorders and, once again, it was negative. So, I started searching the internet about the vaccine compensation program. I felt that I needed to understand the program in order to find the right attorney.

I learned that it was created in 1986 as a result of the National Childhood Vaccine Injury Act. It was encaated in order to limit the financial liabilities of pharmaceutical companies from lawsuits resulting from vaccine injury claims (which were on the rise). It was designed to decided by Special Masters within the United States Court of Federal Claims. It was designed to be a no fault system, which means that nobody is at fault, not the doctors, parents, and most certainly not the pharmaceutical companies.

This all happened because in the 1980's there were so many severe reactions to vaccines, mainly the Pertussis, that lawsuits were going in the favor of the victims and the pharma companies were stopping production of some of the vaccines. The government feared outbreaks so they did this to protect the pharma companies so they would continue producing vaccines. They couldn't just put a stop to the lawsuits because people, mainly children, were really being injured and if compensation of some sort wasn't available, then people would stop vaxing by the masses.

So the Vaccine Court had a beginning. The Vaccine Injury Compensation Program is run under the U.S. Department of Health and Human Services (HHS, for short). Compensation is designed to cover all legal and medical expenses (legal is not a % of award but a seperate claim so victim does not pay or lose money at all), loss of future earnings, and a pain and suffering award of up to $250,000. In the event of death, the maximum award is $250,000. Of course all of this is for the victim, regardless of when the victim dies or how much you have already spent on the victims medical care.

Well, that will have to be enough for today.

Talk to everyone tomorrow.

Back to the story...

Well, getting sick on weekend when you have eleven kids is not easy! But I am on the mend.

I hope most of you were able to feel my outrage towards the hospital staff and their treatment of me, not to mention ignoring a diagnosis in order to promote their own agenda: That we were guilty of harming our precious baby just because we had six other children, regardless of what all the medical evidence stated.

Back where I left off with the hospital on a witchhunt against my family.

The staff had determined that vaccines did not have any other reactions other than fussiness and a fever. It was not possible for my daughter to end up in her current state from some "baby shots".

They disregarded all of the medical evidence, even that of vaccine injuries.

Finally, the last week was drawing to a close and we were arranging for discharge. I could not wait to get out of there. They began going over the discharge plan, how many times a week she needed each therapy, what other doctors she would need to see, oh and the fact that I could not return her to her daycare.

To give a little background, we had been with this daycare for years. I have moved several babies from the infant room on up and it was where Angelica was with her siblings before the vaccine reaction.

I had discussed with the daycare what had happened to her and they were more than happy to take her back. They were aware that she would need therapists to have access to her on a regular basis. I felt it was important to remain around typical developing children in order to have more progress.

Well, the hospital did not like my decision. At this point Angelica was the same as a newborn. She has no medical equipment, nothing extra, she just survived a major brain injury but on the exterior you would never be able to tell.

I recieved a call two days before discharge from the daycare and they told me that the hospital called them and asked them if they were fully aware of what they were getting themselves into. They said my baby was deaf, blind, and basically nothing but a vegetable. The told them that she would require constant nursing care, could they provide that?

Of course they could not so they called me and said that if all of those things were true she would not be able to return. I explained very thoroughly her medical issues and explained that I was very angry with the hospital and their blatant violation of privacy. Once they understood her condition (or lack thereof) they agreed they would have no problem taking her. I went to the nurses station and asked them who and why someone had called.

That is when they went over her discharge "plan".

I had no problem with the therapies, doctor appointments, etc. But they added on requirement for a special needs daycare, of which I had few choices.

They told me that if I did not comply then DSS would take Angelica away from us.

None of her other doctors felt the need for this requirement just the one that "knew we were lying".

Well, I thought it better to agree just to get her out then I will fix it.

The "special needs" daycare was awful! There wasn't even room to walk between the cribs. I don't know how they even got licensed as such a daycare but it was not a nurturing environment. There wasn't even any space for her therapists to come and work with her. I did fight it and with her doctors help we eventually got her placed back into her previous daycare with her siblings.

We were getting followed by DSS since the hospital made such grand claims against us.

I was grateful every day, even more than before, that she survived because I am most certain that we would have been charged with killing her if she had passed away.

My little girl was born with some incredible strength to be able to survive through all of her ordeals.

I did make the attempt to return to the peds office where she recieved the vaccines but the doctor and the staff all insisted that we were wrong and they had no idea how to care for her with her disabilities so we made the decision to get a new ped.

My choice was actually the ped that worked so hard and fought for so long to save her in the ER.

For insurance purposes they have ot give a label because vaccine injury isn't dignosis code so she was given a diagnosis of cerebral palsy.

Her neuro still wants us to pursue the vaccine compensation program. He has exhausted every genetic testing, she even had to undergo a muscle biopsy. He is trying to rule out every single alternate diagnosis so he said it would be easier for us once we get the process started.

After this post I am pretty much going to give an overview of the time between then and now.

A lot has happened but also so little has happened, as you will see.