Sorry, had a long weekend and wasn’t able to add more to the story. So let’s continue shall we.
I left off when I came home to be with Bella, and take care of her and Savayah. It was a hard learning curve compared to the Navy. At least there I had a few manuals that were able to help me figure out the problem and maybe a step or two on how to fix it. Coming home I needed to be the equivalent of a single father of two toddlers. Bella needed near constant monitoring, ensuring the medicines are taken on time, bed pan if she needed to go, constant different foods that were heavily salted yet bland… the list goes on and on, and Savayah wasn’t even one yet, so there’s all the fun of constant monitoring with someone who I had to change the diapers of, wouldn’t tell me what she needed and so on… You get the picture.
The start of our new life was rough. That’s also around the time Savayah got her shots, and a flu shot that we believe may have caused her to regress. You see Bella has a genetic mutation of the MTFHR genes. Heterozygous mutations for C677T and A1298C, meaning both pairs have two mutations each. This is linked to mercury detoxification, and more or less means that if it’s introduced into her system, it’s likely to stay for a long time. At the very least Savayah will have 1 mutation each (basic genetics for two parents) and also has a problem with the detoxification. The Flu shot, every year has an amount of mercury in it for preservation purposes. The level can be toxic to the nervous system and brain if it stays in your system. Most people detoxify normally, and it’s fine. However with these base pairs that poses a problem. We know all the arguments, are not anti-vax or whatever, but we do believe that the Flu shot may have been the shot to break the camels back, or so to speak.
Again this is all theory, but it’s what we believe, and one of the theories that may make sense with Bella’s condition in the way it lines up chronologically. You see before pregnancy, Bella was deathly afraid of needles. This is because when she was real young, a bad doctor or nurse gave her shots and broke the needle off inside of her, which then needed to be dug out. Fun story for the scar however, as you can imagine, very traumatizing. So since then, no shots, vaccines or anything. Luckily when we were kids there were far fewer shots, we got over things the old fashioned way by surviving. I only bring this up in conjunction with the flu shots because Bella was also sick as a teenager. Not as severe, however she was weak most of the time, and had trouble blacking out for no real reason. One day she just snapped out of it after about 5 years, but I digress. The pregnancy forced her to face her fears, and for the good of the baby she got the shots needed and near the end of the pregnancy got a Flu shot, and was told it was ok, even when pregnant. That’s the true start, gradual at first. She was sick more often and we thought it was just her getting more sick closer to the due date, and we’ve never done this before so who knows, made sense at the time.
After we’re done lobbying for Medicare waiver changes so spouses and parents can be the healthcare providers in cases like ours, we may start lobbying for genetic testing before shots, but that’s much further in the future.
So as I was saying before I got myself off topic, the Flu shot is the one common factor between whatever is going on with Bella, and Savayah developing autism. However it’s all just theory and could be coincidental, however in my personal opinion the Flu shot and the large increase of vaccines before the age of two is a large factor in why so many more cases of autism are popping up, and why so many active, life living, people are getting more and more sick.
I’m open to suggestion, but it’s insane.
(back on topic) The first few months of me being home from deployment were almost as bad as the first week of having Savayah in our lives. We love her so much, but the colic and screaming almost constantly almost broke us. We made it through and even with the trials we’re here and working towards an end. The first month I became primary care giver to the two most precious people in my life, and I was ill prepared, but took everything in stride. There were constant appointments for Bella, sometimes three or four a day, every day but the weekends. There was no port, or picc line. She was on a huge amount of beta blockers and steroids, had a new diet we needed to follow, and the list of firsts goes on. The lack of sleep alone would cripple most people. We simply knew nothing, and neither did any of her doctors.
Her vitals were all over the place, and she wasn’t herself anymore. It was heartbreaking constantly, having no clue how to help, and watching her suffer every day. I just put on my happy face, and held out for hope in anything that was suggested, no matter how many things fit and were then deemed not the cause. Any time outside of the doctors was spent looking up what anyone else may have found, that had similar symptoms, and looking up doctors. POTS is what we searched the longest for. Postural orthostatic tachycardia syndrome, meaning the heart rate of an individual goes up more than 30bpm upon sitting up or standing from rest. Usually accompanied by low blood pressure on standing, and a few other things that fit Bella’s symptoms, but not 100%. Her blood pressure has always stayed good. Her heart rate would change from a 70’s resting rate to almost 200bpm for no reason. It got to the point where we didn’t even check it out unless it was sustaining over 150bpm. Constant fatigue, likely because her cardio rate while sitting made things even harder. So many unanswered questions, some we’ve had since the beginning, others figured out and thrown out. Some still apply, but very few from when we first started.
It’s no way to live, but here we are almost 5 years into it all and she’s still here. The only thing I think that’s changed is we’re used too it.
More to come throughout the week and so on. I figure this is a good enough segment to end on and I’ve barely scratched the surface, and I apologize for the sidetrack, but it plays a part further down the line. I’m sorry I’m not a better story teller, but it’ll have it’s ups and downs. Just know that Bella is the strongest woman I know. She’s smart, beautiful and relentless; in the best way. She’s worth saving, and it’s worth telling the story, even in pieces and out of order, because she’s the best person I’ve ever met. It’s hard to find someone so genuine, and true.
Please share and tag with #helpthehero so her story can unfold and shed light on so many things. Once the story is told, and everything all over, I hope this will continue to help those in need. However we’re quite a ways from that.