With what seemed like a million electrodes attached to her scalp, I laid next to her in that bed at DuPont watching her tiny body seize. All I could do is pray while the tears silently flowed until there was just nothing left. I wanted to scream, punch the wall and break down the door at the CDC all at the same time.  Those 50 minutes were pure agony. No one said a word but I knew what the results of that EEG were before they even had the electrodes untangled out that curly haired mess but I had to wait two more days for the “official” results. 

We were well on our way into our Wednesday afternoon routine, driving to speech therapy, when everything collapsed. I saw the hospital number on my phone. I pulled into a development, took a huge breath and stepped outside of the truck. I could hear the kids screaming inside because they didn’t understand why I was stopping. I don’t remember much of what her neurologist said to me because I froze with “Ceceila has epilepsy”.  Seizures I could handle… that word though… that changed the entire playing field. 

God, what had I done??

Vaccines never sat easy with my soul.  I wanted to trust the doctors, their knowledge, training and oath so I shut my intuition down and let my kids be injected with dose after dose of toxic poison. I didn’t do the research. God, if I had though…

Wednesday May 25th, 2016 was the very last morning I would see her not struggle. 

She had excelled at everything.  Walking before her 1st birthday- running before she was 14 months, she as full of personality and had way too many words for a 16 month old– like for real, wouldn’t shut up! She had missed her originally scheduled 4th dose of the DTaP due to a fever, so I had to drag her back in to get it. I was without a doubt in a fog of newborn haziness. Elia had been born in early February and we were definitely still in the adjustment phase but I recall that Friday morning after so vividly. 

I thought she just wasn’t feeling well. She was tuned out, had a fever and just wanted to hang out with her blankets and the iPad. Knowing the end of the story looking back, I know it was WAY more than that. Over the course of next week, she seemed to improve but I noticed little things were off.  Her balance wasn’tright, she was introverted, her word retrieval and overall speech intelligibility had drastically changed, she had frequent moments of staring into space, she had muscle spasms and hand and leg tremors. I spoke to the doctor but he didn’t really see the neurological stuff at first. I knew something wasn’t right though and he referred me to early intervention. They were my saving grace. I was familiar with the system because Nico had gone through it years prior and I was blessed to have an evaluation team not only familiar to me but that of which was comprised with the best of the best.  Each therapist looked me in the eye and told me she needed to see a neurologist STAT.

Freaking out inside… just how bad was this? I made phone call after phone call. The shortest wait time for an initial evaluation was FOUR MONTHS and I would have to drive from NJ to Lancaster PA for it. It seemed like an eternity. How can they make you wait four damn months when your kid clearly not ok??? 

The day FINALLY came.

I got Cecelia up at 4 and we made the trek to Lancaster. The entire ride I couldn’t quiet my mind, I’m truthfully not even sure if I breathed at all. I could see the doctor leaning towards Autism and I just kept saying what about the neurological impairments… the onset directly correlated with that vaccination. (I have yet to find a doctor who actually wants to have a reasonable conversation about that.) He then measured her head a second time and asked me if anyone had ever mentioned Microcephaly to me.  As a Special Education, teacher I knew exactly what he was talking about. Her head circumference had always been on the smaller side but truthfully all of my kids have always tipped the charts on that end of the spectrum. Could her brain really have just stopped growing? I was given orders to schedule an MRI as quickly as possible and that he was going to mark it as urgent in the hospital computer system.  My brain couldn’t keep up. In the days to come, I had myself convinced that we must be dealing with some type of tumor. 

The torment continued inside my skull for over a week.  This time we had to travel to the main hospital in Delaware.  It poured the entire way there. I kept trying to talk myself off the ledge but I was too far gone at that point. I knew she had no idea what was about to go down and I just kept trying to keep that smile on my face. The IV was probably the most difficult part for her, although she handled like a champ. I was doing ok until it was go time. Being so young, they had to completely sedate her. To keep her calm though, they do it while you are sitting there by her side. That moment. I can still feel it like it was this morning. To actually watch your child’s body go limp, be told to give her a kiss and then be escorted to the waiting room all in less than a minute…   57 minutes of waiting. ALONE.

So blessed there were no complications and she woke up picking right back up where she left off. I frantically waited 3 days and then I couldn’t wait any longer. I called the neurologist’s office and needed answers. We missed each other’s calls 3 times. When we finally did connect he told me the scans were clear. No sign of anything. I collapsed in gratitude momentarily and before I could even get up off the floor I remember asking now what? I was directed to the Neuromuscular team the main hospital. I had barely even hung up the phone before I was dialing the number. I needed answers. I needed to help her.  I almost was able to breathe … then I was told the soonest appointment they could give me was 5 months out because I was switching neurologists and even though it was within the same network she was considered a new patient again. Let’s just say I pretty much lost my shit.

After the ugly was over, I pulled myself together and made it a point to call every single day to see if there was a cancellation. I knew each and every person in the general call center’s voice by the end of month 2 and they sure knew mine. Prayer and persistence paid off because there was a late notice cancelation one Thursday morning. I scooped Cecelia and Elia up, barely grabbing the diaper bag,  and headed to Delaware. The neurologist listened, she even verbally acknowledged that she has seen more of this than she would like to admit in relation to vaccinations. She decided that Cecelia should also be evaluated by the pulmonology and orthopedic specialists on the team.  Fortunately those appointments were easy to schedule and both were complete within a two week time span. Neither gave us anything definitive and we were back to the drawing board.  That’s when the neurologist decided an EEG was the next appropriate step… and you all know what the results of that were.

The diagnosis appointment with the epilepsy specialist was grueling. I tried so hard to listen but at the same time I didn’t want to hear a word. Based on the way the seizures presented themselves on the EEG she as certain that Cecelia had a form of genetic epilepsy. I called bullshit on that one instantly inside of my head.  So on to genetics we went. It took a cajillion days to get it approved by the insurance company and then umpteen more to get the results. Her DNA was tested right down to the mitochondria. 

ALL INCONCLUSIVE.

Of course she has variations and mutations but nothing that could be pinpointed to a genetic disorder that would be presenting itself in this way neurologically. All that poking, prodding, testing, and there were no solid answers … 

Oh wait there is that one BIG SMOKING GUN….. 

but no one in the medical community would ever admit on paper that this damage was the result of vaccinations. 

We went home from that appointment with a prescription for Onfi in hand.

The specialist assured us over and over again that it had little to no side effects. 

I knew differently though. 

God had strategically placed one courageous mother on my path months prior to show me the way.

To Be Continued….

Yours Through The Insanity,

xoxoxoxo

Colleen