What Happened to My Normal Little Haygen Baby?

VACCINES AND AUTISM

There is a tremendous amount of controversy surrounding this subject. I can't say that vaccines causes children to have Autism but I do know how my baby acted and was before the MMR vaccine. (Remember this is my blog and these are ONLY my opinions and beliefs)

There are many who agree that vaccines causes autism while there are many more who disagree with vaccines causing autism. There are also many scientific studies that prove they don't cause it. There are many scientists who firmly believe that they do cause autism......and I could keep going on and on about who does and who don't but I'm looking at all of this from a parent's perspective.

Haygen was normal, there was nothing different about him than from my oldest son (who is 4 years older than Haygen) They played together, played hide n seek with each other. He met all the milestones on time and some before it was time. He could talk, walk, see, play and eat by his self, everything a normal toddler would do. NOTHING was different. I am positive that I did not miss any signs because there weren't any to miss. I could understand that I could've missed some signs, IF Haygen was my first baby, but he wasn't.

He did not get his MMR at 18 months because we were in the process of moving, so I waited until he was 19 months. Almost, immediately I knew something was wrong but in 2008, I didn't watch or read the news and I had no idea of the controversy between autism and vaccines. That never once crossed my mind that the vaccine did something to him. I was watching him play and I watched him fall, he didn't trip or anything like that, he just fell limp. It looked like how you would hold a dish rag up and let it go, it was weird because I seen his eyes and they were rolled back in his head. I was scared to death and didn't understand.

I picked him up, grabbed the diaper bag that I kept by the door, got in the vehicle and just drove. I knew something serious was happening so I didn't even bother stopping at local hospitals.........I just kept driving until I got to Arkansas Children's Hospital (ACH).  We had been there for hours waiting and finally were called back BUT Haygen was playing and acting like a normal toddler would, so they were going to discharge him (we were still in the ER had not been admitted at this time) BUT when I was signing the discharge papers it happened again. He fell just like he did before we got there but this time the doctor SEEN him. We were sent directly to neurology and Haygen was immediately hooked up to the video EEG. You should've seen the seizure activity that was going on, I just cried and cried. This was the beginning of our 1st and longest hospital stay. It was 4 months.

During this time, he stayed hooked up to the video EEG for 3 1/2 months out of the 4.  He was having 20-100 seizures PER DAY :( And during this hospital stay he lost his ability to walk, talk, sit up, crawl and even hold his head up. He had lost all of his motor skills. I was a complete wreck and I pretty much hated the world then. I kept asking "What did I do wrong?" "What has Haygen done to deserve this or what did I do to cause this much pain on Haygen?"  It is tough.

I did eventually pull myself together while we were there. I remember there were so many teams of different doctors in and out of our rooms because BELIEVE ME there wasn't nothing that they did not test for.......NOTHING. Over a year after the seizures started, I was told he would never walk or see again.  You can read more about this here at The Beginning of Our Journey and at 2009 The Year of Total Darkness LeBonheur Children's Hospital also confirmed that Haygen would never walk or see again. After 2 years and 2 months of NON-STOP seizing everyday, his seizures completely stopped. You can read more about that here at Our New Beginning

Everything has been ruled out except the vaccines, and it never would have crossed my mind if that doctor had not asked me for Haygen's "original" shot records and told me "I can't rule it out and I can't stay that it is"

Haygen has been tested for Rett's Syndrome, Angelman Syndrome, Lennox Gastaut Syndrome and many genetics tests have been done by different hospitals. They have not diagnosed Haygen with anything yet, maybe they just don't know or maybe its because they know the vaccines caused it and just don't want to admit it. We will never know and that's ok if we don't because he's already beat the odds that were stacked up against him.   He stopped seizing, he started walking and seeing again and finally in 2012 his feeding tube was removed. After 6 years of testing all they can tell me is that he has characteristics of everything and although his autism characteristics are more visible than anything, they have not diagnosed him as autistic.

So you can see why I think the vaccines played a part in this, I mean even the doctors are all sitting around puzzled. They can't figure out what's wrong or what happened to him and they can't figure out why his seizures suddenly stopped. Even though I believed they played a part in this, I did continue with his vaccinations.  It was a tough decision but I know it was the best one. I will write about the reason why I chose to keep vaccinating later on. So for now I do believe they played some involvement but not totally to blame. I am just happy I still have my Haygen Baby because there was a time when I (even the doctors) didn't think he would make it to the age of 4. He will soon be 8 and I couldn't be any happier.

Groundhog Day.....

Our life is very much like the movie Groundhog Day. We do the same thing everyday BUT everyday is different because you never know what to expect. We do everything if at all possible to avoid meltdowns. We have routines. We have our morning Monday-Friday routine for getting ready for school and work. Our afternoon routines are the same Monday-Friday after work and school. The same goes for Saturday's and Sunday's, the routine is different from M-F but it is the same routine as the last weekend.

I've never been a stay at home person, me and Zan was always on the go before I had Haygen so this has been a huge adjustment for us. We spend a lot of days, nights and even holidays just the 3 of us together. Some people think we just don't want to be social but it really isn't that easy. When we do get away from the house, we pretty much have to load up the whole house to go somewhere, even the wheelchair. Even though Haygen can walk now, I still have to use the wheelchair because he doesn't understand commands and he's never still. He is like the "energizer bunny" his batteries never run down. During our stay in Memphis, he was tested for "Angelman Syndrome". Children with Angelman Syndrome are very happy and require little to no sleep and you've guessed it, he was negative. He did not have Angelman Syndrome!! On a good night, Haygen may sleep 1-2 hours a night and that's through out the whole night not all together.

Haygen has no fear and feels very little pain. He had cut his foot one day and I had no idea until I saw bloody little footprints throughout the house. He never cried or anything, and I had no idea how he cut it. I spend pretty much everyday trying to "Haygen Proof" our house but you really have to stay on your toes with him. He's very smart and he can figure out more than you'll ever know and that's because he can't communicate it to you. I bought our first house at the beginning of this journey but I never knew the path our lives were fixing to take. I love my house but I'll probably have to rebuild it from the ground up before we are even half way through this journey. It's a very good thing that I own our house because we are constantly "Haygen Proofing" it just to keep him safe. The way I look at it is that everything can be replaced except our Haygen Baby. We are always at our house except for when we are at work or school. Thank goodness for the never ending evolving of technology because our iPhones, iPad's, and everything else is what keeps us connected to the outside world. I always tell people if it doesn't happen on Facebook or Twitter then I don't know about it and they just laugh but I'm dead serious :)

Being a parent to a special needs child takes a lot from you. It affects you personally, physically and emotionally so being able to get a break from it all is very important. You need a break so that you can recharge and stay the good parent that you are and that's so hard to explain to someone on the outside. They think you are being selfish and that's so far from the truth. I've tried and tried to explain this to a person and it does no good. I don't ask anyone to keep my boys for me to go out and party or anything like that, its mostly when school is out and I have to work. I understand some people not wanting to keep Haygen because its a lot on someone.....Believe me I know :) But when you ask everyone that you know and beg and plead with them because you REALLY need to work and the answer is always NO, that's when it dawns on me that we really are in this world alone. Its a huge emotional roller coaster but when I find myself in the situation again, I always ask anyway thinking the answer may be yes but it never is :(  I haven't stopped asking for someone to watch them while I work but I have stopped asking for someone to watch them while I have time to recharge.

I did ask someone about a year ago if they would watch the boys one weekend a month so I could go and do things once a month without the boys and the answer was YES. Well, I'm still waiting for that to happen. I have FAITH that it will happen, ok maybe not for me but for somebody it will :) I can't stress that enough about how important a break is because the Groundhog Day is real in this life and it doesn't stop. That's all you have to look forward to, doing the same thing everyday. I guess the only thing that keeps me going is MUSIC. That's all I have (well besides my phone lol) that I enjoy and I can listen to it, sing it, scream it or whatever and wherever me and the boys are :) On the bright side of things through, I have been raising an 1 year old for the past 6 years (Haygen is 7 and on an 1 year old level) and that means I'm not getting older either :)