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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


Let the madness begin...

After Maggie's little spasms not really getting any better, I had sent an email with a video off to our neurologist. He is concerned that these movements could be Infantile Spasms and wants to get them captured on EEG. The more and more I've read, the more I am convinced that they probably are. Which would be a whole new manifestation. Apparently they have their own chaotic appearance on EEG, so we should have it confirmed with the EEG. I've found myself quite anxious about these changes, as prognosis for intellectual development is not that great, particularly if the etiology (cause/origin) is unknown. I can't image the cause will completely become clear as we have not had much luck yet with the whys.
However, in my further research this afternoon, I have drawn many conclusions and my own theories. There are more rationales in my thoughts, but here goes with the basics...we know low pressures affect her, but I neglected to consider it until we were traveling to Killington Mountain. The night we arrived there is when I first noticed these mannerisms. From my research, Infantile Spasms (IS) can be caused, among other things, by hypoxic ischemic encephalopathy (a lack of oxygen to the brain). Which can be caused by a number of things as well(carbon monoxide poisoning, drug overdose, low blood pressure, a handful of other things, AND high altitude). So, it makes sense that prognosis could be bad if the brain doesn't get adequate oxygen. Which brings us full circle to the drastic pressure change from the C-section and the possibility of hyperbaric oxygen as a therapy. Granted, this doesn't provide complete cause. But it does all seem to fit in the same picture.
Questions still remain...why compromised overall? why trouble with oxygen and low pressure?
I HATE the thought of more medicine and a long hospital stay to try to get this all regulated. But they obviously need to be controlled. (most things say IS appears not a huge deal but has BIG consequences the longer it goes untreated). One thing I did find in my research is that her one effective med is one they consider for effectiveness with controlling these spasms. The effective dose is 8-32 mg/kg/day. If I did my math correctly, from her weight a month ago, she is currently at about 7.2 mg/kg/day.
Tomorrow morning is our EEG that will reveal a lot. I won't be surprised by much on it, as she doesn't seem to be sleeping the best either. However, we are in for a difficult 24 hours (that's before we even have any test results). Tonight we are to keep her up 2 hours late. Then we have to get her up 2 hours early. So, we may get to sleep from 10-5. But, no nursing after 6am. Then we get to drive to Knoxville and not let her fall asleep. Luckily Nana is going to drive us down. I get the adventure of tormenting her the whole way to keep her awake. EEG is at 10.
So...in my idealistic world, she will just be chill the next few hours and will be so busy laughing and chatting with me in the morning that she won't realize how hungry and overtired she is. Heck, over-tiredness makes Momma fairly wired. (and we all know that Cousin Quin can't stop laughing when he is overtired). Maybe, just maybe, she'll follow suit. Then, in my ideal little world, they will just want toup the Zonisamide some and prescribe the hyperbaric oxygen chamber. Easy, right?! Yeah, good luck with that, I know. But hey, why not pray BIG!! Please join me in big prayers to a big God!
In the realm of possibilities, I know God could work in that way, but that doesn't mean he will. As Shawn pointed out, we've been riding on the mountaintop of things going fairly well, but we could be headed back to the valley for a bit. I have actually had some anxiety this week about the whole ordeal. When Mags is out of sorts and there doesn't seem to be anything we can do, I often find myself praying, "Calm sweet Maggie's anxious little heart!" This week, the more fitting prayer is "Lord, calm Momma's anxious heart!"

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