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.

Hard to believe...

It is hard to believe how much actually happened in such a short time. I cannot even begin to put into words my emotions and heartbreak over the course of all these events. Even as I look back on what I wrote the last couple of days. It seems so dry and almost emotionless. It reflects none of the tears, fear, and anger I experienced. Every single minute seemed like an hour. Even my husband doesn't truly know the extent of my feelings since he had to stay with the other children at home most of the time. Of course, I have no idea what he went through emotionaly either. I had guilt for being at work when it happened but I am sure he had feelings since he was at home while it was happening.

I am not even fully at one week after she was admitted yet so much had actually gone on. I appreciate everyone who has stuck around this long. Obviously it is going to take me a little longer than I thought to get this story told.

Well, I left off where I found out about her brain being injured....

Finding out about the brain damage and not knowing if she will ever wake up is the most heart stopping moment I had ever gone through. The even harder part was calling my husband and asking when he would be coming back for a visit. Having to tell him was terrible. Neither one of us was able to even talk much about it.

Who wants to talk about if their child is going to die?

I am a bit of a control freak and this was most certainly out of my control and it was very hard to hold it together. I did try to go home for short periods and play with the other kids. The child older than Angelica, Lucas, was born with a birth defect so the kids already understood hospitals and sometimes babies had to stay there. Fortunately, they had no idea what was going on or how near death she was.

They had such faith in the medical community. They always smiled and told me not to worry, doctors can fix everything. They also came to the hospital to visit. They never got to see her but we always talked about her and the nurses were so nice and compassionate.

To the hospitals credit, they made everything as nice as possible. They made sure I always had anything I needed or wanted. I was with Angelica for every moment she was not in procedures. They have been working, literaly, around the clock, to find a solution or a cause to what happened. I think I met with every specialist known to man.

They kept asking me the same things over and over. Did we do anything differently? Did she eat anything differently? Was she exposed to anything new? They could not find any biological factors so they were looking for environmental factors.

The geneticist spent the most time with us. Going over and over with me and my husband our family history. We both called our families to find out if there was anything in the family anywhere that might have happened similar. They were also curious about any dead babies, babies that died of unknown causes, and SIDS.

We moved several states from our families because it was better to be away from negativity and neither of us found our most immediate family very conducive to a healthy emotional life. So, that made this step that much harder. We rarely call or visit but now we are calling with some difficult questions and explaining that our baby may die.

I was raised Catholic, very traditional, celebrating the Tridentine Mass, which was still said in the old way in Latin. Due to many reasons, mainly my own uncertainty, I drifted from the church, from all church, and from religion.

When this all happened, I had some very irrational thoughts that this was my punishment for my betrayal to God. I began praying diligently and constantly praying the Rosary, begging for my daughter to remain with me.

My husbands fmaily had little to offer and mine was not much more helpful. There were some SIDS cases and premature baby deaths but that was so common on the environment and medical community of the time.

I remember criyng and begging the geneticist to figure it out. I kept stressing that my baby was perfect when I left for work. The only thing different, out of routine, etc was her vaccines. She had her vaccines on Friday. I remember that I said that over and over and over to every doctor. Finally as nothing conclusive was coming back the genetecist starting paying attention to me.

I told them all about Friday, even about how I didn't want her to have her shots that day.

Finally, the neurologist came in and said that he and the geneticist spoke at length rereviewed the lab work and he explained that he would like to speak with some outside consortiums, if I didn't mind. Of course I didn't mind. Speak to whoever-JUST FIGURE IT OUT!

She still hasn't woken up but her pheno levels were coming down. It would hopefully be any day and we will know if she would awaken.

The neuro came back a few days later and said he thinks the figured it out. He has spoken with other neuros across the country and one of his colleagues in Maryland was an expert for the Vaccine Court and after reviewing our case they came to the determination that this was a severe reaction to her vaccines, most specifically the DTaP, the P part for Pertussis.

I was told that reactions, especially this severe were extremely rare. Most especially because she recieved the aP for acellular pertussis. They had to change the composition of the vaccine because so many children were having these reactions to the whole cell pertussis vaccine. My daughter had a very, very rare side effect to the acellular.

Not very comforting news.

Also, it is irreversible.

But the neuro told me we wouldn't have to worry because the government already had a plan in place for these situations. Lawsuits were not allowed because of a federal law but we would be able to have all of her medical needs taken care of by a program, set up between the government and the pharmaceutical companies, called the Vaccine Compensation Program. He explained that he had already reported the reaction, we would just need to file.

How simplistic he made it sound.

He also said she was never to receive the DTaP again. They could administer it without the Pertussis.

She still hasn't woken but her pheno levels are almost nonexistent. I was now beginning to wonder if she would wake up. How do I tell the other kids? Would they blame me? I certainly blamed myself. How would I cope with a funeral?

As an aside to all this, the rest of my life rolled on. I was a restaurant manager and our family required two incomes. My husband was still working and thankfully my coworker, even in other stores covered for me so other than them, nobody knew I wasn't at work. My pay was still coming with no problems but I knew this wouldn't last forever.

How would I ever be able to go back to work? I felt such guilt for not being there for my baby. I cried and cried and cried and cried. It had to be my fault. Why wasn't I there for my kids? Why was I being selfish and trying to further my career? Was it really worth it? God forbid she didn't make it, how would I ever return to work?

I was very much into beating myself up at this point. But I never once blamed my husband. I look back now and am so glad that we didn't turn on eachother. I was the mom and it had to be my fault. I should have been there for her. If I had not been at work I would have been holding her and would have known right away that she had quit breathing. She wouldn't have lost as much oxygen. Her brain wouldn't be as injured.

I was told that if my husband had even been about 30 seconds longer in picking her up, she wouldn't have survived this long. Apparently when he picked her up it startled her system and she began breathing. I don't know why I called home and made him check on her but I am glad I did.

We were also told that it was a very good thing that she did not get her shots until 3 mos (thank goodness she had RSV-who would have known I owuld have ever said that?) because she wwould have died for sure at two months, if not from the reaction itself then frmo the meds necessary to stop the seizures.

Finally!!!!!!

She is waking up!

The nurses were so excited when they came to tell me. I really don't think they were expecting her to wake up.

The first thing I asked as I was holding her was if I could feed her. I was so excited to be able to look into those gorgeous eyes that I thought I would never see again. I think I wanted to feed her to feel like I had my baby back. To feel normal again. A mom nursing a baby. All would be well in my world. My husband was already on his way. He, too, was so excited.

They explained, in sort of a "Let's just humor you" kind of voice that I could attempt to nurse her but with the extent of her brain damage and where the damage was that she may not be able to nurse. That I needed to be prepared for the fact that she most likely will need a feeding tube.

But they let me try. The nurses were so great. Nobody really thought she would have the sucking reflux necessary to nurse but they wanted to comfort me in any way possible. They got us comfortable in a chair and I held my baby in my arms for the first time in over a week and a half. That alone felt so wonderful.

I went to latch her on, crying, knowing I am fighting a losing battle, trying to return our life to some semblance of normalcy.

She latched right on! Started nursing like she had always done it and hadn't missed a meal!

The nurses were shocked! The next thing you know, we had a circle of people around us, doctors, nurses, all in awe of the fact that she was nursing, sucking, swallowing and apparently doing fine. I am a very private person but I was so happy that I didn't care who watched. I just rocked and talked to my beautiful baby girl.

The same nurse who was there the night we were admitted helped me to lay her down and gave me a hug. He has been there for her ever since that night except on his days off. With the exception of a break here and there he cared for her and her alone all that time so it seemed as though he was as invested in her recovery as we were at that point.

All I could keep telling everyone, with tears in my eyes, was "I told you, I told you, I knew she would wake up. She knows her mommy."

This is when the doctors told me all the hard stuff was yet to come. Through all of her testing they told me that she would never be the same baby I had two weeks before.

They told me that she was basically a newborn all over again so she would not smile and would not do much if anything.

I was also told that I would stay for about a week in that hospital but we would need to start on a plan for the future.

I told them that I knew her plan for the future. She would come home and be loved by her family. They didn't think that would be enough. Whatever!

They began discussing with me a rehab hospital. They thought she would benefit from extensive therapies before returnign home. They wanted to send her just a few miles away to a rehab clinic connected to that horrible hospital I didn't want to go to in the first place. I fought it but the neuro convinced me that it would be the best thing.

Just want to interject here that I lost all faith in doctors and have no place in my life for bullying. I regret giving in to him and I should have questioned him more and gone with my gut instincts. I have always trusted everyone in the medical community. I trusted what they said about vaccines and now I was trusting what he was telling me about the rehab hospital. I don't have any trouble with those that do have all the faith in the world in their doctors and trust every word but I have learned through hard experience that while they did go through a lot of training and experience, they do not know everything. They advise based on what THEY know best not always what is actually best. This is simply because they cannot know everything.

All went well the week following her awakening. We were placed on the regular peds floor. Therapists began coming in. I oculd tell she was not the same baby. She was very stiff. She was very irritable and she had never been before. It was very stressful relearning everything, basically starting over. Imagine you have had three wonderful months with your baby just to have it snatched away and have to start all over. Your baby is no longer comforted by you. She eats but is rarely content. She is so stiff that is hard to hold, let alone be comfortable holding. And all the while all you can do is compare. You compare your "old" baby to this new foreign baby. Because it truly does feel like an alien invaded and took over your baby and now you feel so inexperienced and inadequate. You can't help but cry and remember what it was like to have that happy giggling baby.

But I was so glad she was alive.

This is where the doctor pulled the right strings to convince me to place her in the rehab hospital. He explained that the brain damage was so very severe that they are hoping, with her being so young, that some of the brain cells will get kick started or regenerated and bring back some function. She was stiff because of the stroke. Some stroke patients get very slack and limp but Angelica went the opposite and was very stiff. They were hoping that the therapies would loosen her. Inpatient would be best because they would do so much more therapy each day being right there in the hospital. I was told not to worry. I would be able to sleep in her room just like I was now. Nothing would change except the facility.

I agreed because what mother wouldn't want to do what is best for their child?

I just could not stand that hospital because of previous experiences and I disagreed with some of their administrative policies, they were, and still are, fundamentally wrong.

Also, this was about the time that I had to make a decision about work. They could no longer shield me so I would need to return to work, even if on an abbreviated schedule (which they could still hide or take a leave of absence or quit. I had a boss who did not like me, personally, nothing to do with my work she just didn't like me. She told me so. She even told me I would have been promoted if I didn't have the kids. She didn't like my children or that I could balance everything (she didn't have any children). She told me this on several occasions. The other managers knew this and tried to shield my absences from her. To understand better, you need to understand the company I worked for. They required relocatability. At a moments notice. I already survived on transfer out of state and fought my way back. I was so very fortunate to be assigned to the store so close to the house and knowing how severe Angelica was I didn't want to risk it. If I took a leave of absence then she could put me anywhere she wanted to when I returned. I could be in a store up to an hour away if I wasn't transferred out of state. I needed to have consistent care for her at this time and did not want to be transferred so I went back to work. They were very flexible with me. I still slept at the hospital and spent a lot of time with her but I was the main and highest wage earner and it really was not an option for our family for me to just quit.

I know, I know....many of you are going to judge but until you are there in that situation...

While I loved Angelica, I still had six other children at home counting on my income and my insurance. Public assistance really wasn't an option considering it wouldn't have covered the bills anyway. To protect the future and my family I needed to work.

Yes, looking back, I can't believe I did it. I don't know how I did it. I think work was helping me to cope. Life felt out of control and I still had some control at work.

Would I do it again today? Probably. There really was no other option. We had no family around. Nobody came down to help with the kids so when they weren't in daycare, they were with my husband which ruled out his working a second job.

It was such a terrible and isolated time period. We had to go through all of that pain and struggle all alone with no support system. All my husband and I had were eachother and the other children. We became a much stronger unit.

So, we tranferred to the other hospital.

My initial reaction was ugghhh.

It was not a peds friendly facility. Mostly older patients and the place was so antiseptic. The staff was also not so friendly.

We got settled and started to meet the staff.

Immediately, I noticed a change in...I don't know...attitude? treatment? It is hard to pinpoint. But it felt like going from Hawaii to Alaska in five minutes.

They immediately made me begin going over and over again how it happened. I told them step by step how it happened. I even told them that it was determined to be a result of her vaccines.

I will never forget that snotty doctor going "UH-HUH!" so smugly.

The staff did not treat me very well. I didn't think much of it until I cam in after work and the bed was stripped and I could not get the staff to get me any bedding. They would rarely leave me alone with her. They were always bugging us and not allowing her to have any rest time just being snuggled. Which was so important to me since I was working and cherished every moment with her. I couldn't wait until she would be released to return to our normal (or as close as possible) life. But they weren't being very forthcoming as to how long I would be there.

I have had bad feelings the whole time I have been here. I can't even begin to talk about all that I endured while there. The final straw was when I came in and and noticed that her bottle had formula in it.

Now this when you should remember how I stressed earlier in my story about how much milk I had frozen, not to mention how much I had stored while she was in her coma, on top of the fact that I was still pumping at work.

I immediately asked the nurses why she was drinking formula. They told me she did not have any more. I was shocked! I ran to the refrigerator and the freezer was empty!!!!

Where did her milk go??

They gave me some ridiculous story about how a mom was discharged that day and Angelica's breastmilk was mistakenly given to her. I could not fathom how this happened since there were very clear medical labels on each bag and container.

Now, after knowing what I do about the situation, I think they threw it into the trash.

There was no apology, nothing.

This all happened within the first four days in this hospital.

But Angelica has never had anything but breastmilk so she refused to eat unless I was nursing her or if it was breastmilk. The staff said that they thought something was wrong with her. She was refusing to eat when I wasn't there. I pumped at work but not enough to keep up with their "schedule". So, she started to lose weight. Somehow thier treatment of me worsened. I was no longer permitted to go into her therapy sessions. One of the members of the "treatment plan" was a psychiatrist. Well, I thought this was dumb and told them so. She was four months old. Surely, she doesn't need help coping with the changes in her functions.

But the psych kept coming around. I was more bothered because they seemed to schedule all of these things when I was there vs when I was at work. This boiled down to me barely seeing Angelica. I was still sleeping on an empty bed, with no sheets. Nobody seemed to know where they were or how to get them. A call to Admin did nothing. They also kept me up all night. I was never allowed to be alone with my baby.

The psych kept quizzing me about my feelings. I told her I was coming to grips with everything. I couldn't have prevented it, I couldn't have known it would happen, it was the vaccines. I wasn't even really angry yet, still in shock.

Then she said something that really angered me. She asked me if I was sure I could not have prevented it. What about my husband? How much did I trust him?

This was my first peek at what was to come.

They were discussing discharge. It should be in about a week. I could not wait. This place has been horrible!

My next visit (I have now been there only one week) was from a social worker (DSS).

Once again, I was quizzed about how it happened. How much did I love her? How much did I trust my husband? They knew I did not do anything since I was at work but how much did my husband love her? Was she planned, wanted, etc? What was it like having a large family? We didn't really want nor could handle seven children, could we?

To say I was angered and insulted is an understatement!

Are they accusing us of harming her?

This was already determined. I called the neuro and told him what was going on and he came right over. He spoke to their staff. Went over her record with them and explained his diagnosis and also explained there was no trauma, that this was an effect of the vaccines in her body.

The doctor of the rehab came in after he left and told me that she didn't care what the findings were, she knew our kind. You have a bunch of kids, you regret it, then you decide to thin it out a bit.

She said she didn't believe his diagnosis and she was going to find the truth. She said she just hadn't figured out how we covered it up yet, but she will.

Now all the pieces fell into place.

The stripped bed, the missing milk, the cold treatment by staff.

I was livid!!!!!!!!

Well, I know this is sort of a bad place to leave off but I have covered a lot today and need to move onto other tasks now.

I will pick up here next time because the hospital was not done with me yet!

Thanks for hanging in.

Where we left off...

I am going to pick up where I left off: we were getting transported to a larger hospital...

The ambulance ride was terrifying. They made me ride up front so I couldn't see her. It was later explained to me that they were afraid that she would die on the way and they didn't want me to be right there. They kept giving me updates from the back. We were flying down the interstate with me getting very angry with the rude drivers that ignored the ambulance, lights, sirens, etc and stayed in our way.

As soon as we arrived at the hospital they wisked her off to the Pediatric Intensive Care Unit (PICU). I had to wait in the waiting room just outside. This is where my husband found me.

After what seemed like hours but was probably less than one hour, they took me in to see her. She was wired from top to bottom. They explained that they had calls in to specialists to get a consult because they had no idea what was going on or really how to stop whatever it is. We were assigned the nicest nurse. He explained that he had actually gone to school to be a nurse practioner but loved the PICU so he still nursed there and used his advanced skills to help babies. I really think his confidence kept me going while she was there.

It was explained that her seizures were uncontrollable and they had to continue administering phenobarbitol to bring them under control. The massive amounts of pheno basically put her into a medically induced coma so they could do testing and try to figure out what was going on. I think that is the smartest thing they could have done and I credit it as one of the reasons my baby is still with me.

She was in that coma for a week. Over the course of that week she underwent so many tests. It was so hard for me to see her laying there lifeless not knowing if she would ever leave the hospital. But I oculd not even explore that possibility.

They performed MRI's, CAT scans, optical scans, EEG's, and tons of blood work. They ended up giving her a central line ot cut down on the number of needle sticks. At one point the IV line draped across her leg and her system was so sensitive that the IV line caused a third degree burn. The staff was so apologetic and promising me that cosmetic surgery would be free to fix her. I remember being flabbergasted! I wanted her to wake up and live, I could care less about her leg at that point in time or cosmetic surgery. All of the preliminary tests showed nothing conclusive. The hospital was great. They gave me my own room right down the hall from the PICU and I pumped and froze the milk in order to maintain my supply.

The explained that she had four times the safe limit of pheno in her system so we would have to wait for it to wear of to wake up (or not).

I knew everything about my baby at this point. How many heartbeats she had, how her breathing was regulated by machinery, what every beep and bleep of the equipment meant. That is why about five or six days in I noticed a change in her EEG. It wasn't looking the same. There were a lot of wierd spikes.

I was hoping it meant that she was waking up. I immediately mentioned it to her neuro, who took her right down for another MRI.

Somehow I knew, when the phone rang in my room, that it wasn't good.

The neuro asked if I was available to meet. Who was he he kidding?!? My life revolved around doctors, nurses, and shift changes.

He came right up and took me to another room down the hall. For any of you who have never been through that, it feels like the longest walk ever. They don't take you to a special room for good news.

He put her scans up on the viewer and pointed to it explaining that it was the scans of her brain. He then proceeded to show me the large white areas. Those white spots were dead brain matter. He explained that sometime since her last scan she had stroked which was another way to say that her brain was deprived of oxygen. He explained that her damage was extensive, more than 60% and it affected both sides of her brain. Oh, and he wasn't done crashing my world...the parts that were damaged basically controlled everything, sight, vision, hearing.

I asked the all important question: Will she wake up?

He did not know. Honestly, not a very good possibility and I may want to explore making arrangements in case.

But we will not give up. Because of all the other children (she was my seventh child) regardless of her outcome we needed to try to figure out what caused this.

Genetic condition, environmental, etc. Trauma had already been ruled out through all the other examinations and testing.

She was still very much unconscious. They checked her pheno levels several times a day. It would have to just wear off before we would know if she would regain consciousness.

Well, that is all I have time for today. The next stage is figuring out what caused this horrendous tragedy.

Let's start at the beginning...

I am going to start at the beginning in order to give a full understanding before getting to the heart of the issue.

Angelica was born on November 12, 2000. My beautiful little millenium baby. She was as healthy as could be.

I had been on maternity leave for several months and was excited to be returning. She was nursing well and never even needed formula. Fortunately I had a surplus and was able to freeze a lot of milk in anticipation of my return to management (this will be more relevant soon).

I returned to work just before Christmas of 2000. I quickly regained my work/children/marriage balance and life happily moved forward.

Angelica had RSV when she was due for her two month well check so her vaccines were held up until she was healthy enough.

A month later she was once again as healthy as could be. We went in for our well check. She is now three months old. The doctor went over the vaccines she would need. I was not feeling comfortable about them. I cannot figure out why. I tried to delay them but was told that it was not possible and it would be neglect if I didn't have them administered that day. I reluctantly agreed. I still regret that moment and have a lot of negative feelings for allowing myself ot be bullied. I also have no tolerance for doctors that bully their patients.

This was on Friday, February 9, 2001.

February 11, 2001-The day I will never forget

The day started out like any other day. I needed to be at work by 9 am so I woke up early to spend time with the kids and feed the baby well before I had to leave. I liked to nurse the baby as much as possible because she was more content when I did and it helped the milk in the freezer to last longer. I tried to pump at work but it is very hard to do when you are a restaurant manager. There is nowhere private to go and there is little free time in the day.

I remember feeding the baby then playing with her. I was singing her songs and she was laughing and giggling out loud. After she began to get sleepy, I fed her until she went to sleep and I laid her down.

There were no signs or signals of what was to come.

12:30 pm

I am at work. This is our busiest hour because church just let out and we are slammed. All of a sudden I felt the need to call home. I ran to the office and called my husband (he was at home since it was a Sunday). He was surprised I had called because he knew what my weekends were like at work. I asked if he had fed the baby yet and he said he had just warmed her milk but that she was still in bed. I told him to go and check on her. I don't know why I felt so bothered but just to get up there and check her quick.

I went back to work.

Not even a full minute later he called back. I took the call and all he said was "Get home now!"

I only lived three miles away but it was the longest three miles of my life. I more than doubled the speed limit and all I could think was I dared someone to try to pull me over.

I ran into the house and my husband was holding a very limp and barely breathing baby.

She was as white as a ghost and limp. She was also very sweaty. She just kept twitching.

As we waited for the ambulance I asked him if this was how he found her. He said she was soaked so he stripped her down to her diaper and then he became really concerned when she didn't respond.

I could not stop screaming. I was trying not to scare the other children but I was too scared. I had always harbored a huge fear or SIDS and this was like my worst nightmare come true.

When the ambulance arrived, they took one look at her and wasted no time. They loaded us up on the ambulance. They allowed me to hold her the entire way. We were taken to the local hospital. On the way they began to get a history and vitals. The problem was that my precious baby girl really had no vitals. There are no words to describe my anguish.

I just remember that I kept begging them to keep my little girl alive.

Once we arrived at the hospital, they continued to work on her and try to figure out why this all happened. None of the meds were really working. She started to sieze. Very bad seizures. At one point, she projectile vomited. It looked like a scene from a horror movie. It shot across the room and out of every orifice. Her nose, mouth, everything. I had never seen anything like it and neither had anyone in the ER. Around this time her temperature rose very rapidly, well over 105. The ped that was on call promised me they would not give up. They continued to work and push meds until the siezures seemed to be coming under control. Finally, they admitted us to the hospital and we were given a room upstairs. She was still not responsive and had no interest in nursing, she didn't seem aware that I was there.

Suddenly she began seizing worse than before.

This time there was no getting them under control so they arranged for transport to the closest city and a bigger hospital. I did have enough coherency to request a particular hospital because I had issues with the only other choice.

They put us into an ambulance. They had no real choice, I was riding with her. She siezed the entire twenty minutes.

Getting admitted into that hospital began the next chapter in our lives but I am forever thankful that I made sure to go to that facility.

That is all for today. I thank you for reading this much and hope you will check back for the rest.

Well, this is my first ever blog

Well, this is it! I made a decision to start working on making a change and this is my beginning. I will post more tomorrow but I am just excited that I have figured this out.

I am hoping to utilize this to garner support to change a much broken system and prevent families from going through the additional and unnecessary pain and suffering we, and many others, have gone through.

Good bye for now!!