This is Why I Like to Post at Night

OKAY, so this is why I like writing these things at the end of the day and not the beginning - because I like to add in things that happen that day, but I don't know what is going to happen during the day, like how many times she will sleep or how sad or happy she will be until the day is over. But today I started to write blog early in the morning - like 8:30am or so - while I was waiting for Abigail to wake up to eat (I didn't go to work today because Sheena couldn't tend--blessing in disguise). It is now 6:45pm and I am just getting the chance to sit and finish the day's events while Abigail is sleeping again. (Yes, AGAIN! :)) BUT! after I was bragging about having the seizures under control and how we were doing pretty good Abigail decided she was going to have a seizure...a big one.This one was a doozy. It lasted about 2 and a half minutes and consisted of 3 different kinds of seizures. It was different from any other seizure that I had ever seen of hers. This time she actually had jerking motions where as before hers were all very tonic (stiff). Afterwards she was COMPLETELY limp and EXTREMELY lethargic. She just laid there with no muscle tone at all and stared off for about 5 minutes. I could tell she was with me still because she startled and responded to a diaper change. (If anything at all good came out of this seizure it was that she was FINALLY able to pass the bowel movement that she'd been working on for almost a week! - seriously, tomorrow would have been 1 full week with no poopy - no wonder she was in so much pain! - If anyone has any remedies or tricks they have used I would love to try them! I've tried belly rubs with and without lotion, doterra's essential oil DigestZen, bicycle legs, and tummy time, but nothing worked.)
The whole thing started with one of those breath holding things that she does that I hate so very much. Those breath holding things have been happening a lot more frequently (pretty much starting after saying i'd be okay with never seeing one again in one of my earlier posts-my bad), but I had seen 6 since the beginning of May - including today's. And that is just counting the ones that lasted long enough to result in a seizure. She goes blue and holds her breath way more often than that- at least once a day if not more - but the ones that suck most are the ones where she goes till she's about to pass out then has a seizure afterwards - and there have been 6 of those that I have written down.

Well I have wanted to get a video of this breath holding thing for a while to show the doctors because they all say she is too young for "breath holding spells" and don't really have an answer as to why she would be doing it, maybe seizures, maybe something to do with the malacia and it blocking the airway - so I thought if they could see what I mean it might give them clues that I wouldn't have thought to tell them. Anyway, she went into this breath holding thing so I grabbed my phone and started to video--I kept the video rolling so that they could see her seizure and breathing afterwards - that was a lucky time to be able to catch the video because I was able to get the whole seizure videoed. I immediately called my neurologist, pediatrician, and the NICU doctor. I left messages with my neurologist and pediatrician but got a hold of the NICU doc - who was no help, except succeeding in getting me not to worry about the destruction of the seizure. He said it sounded relatively short (after 5 minutes is when you are really supposed to start worrying) and that with her pretty intense and complex seizure history to just get a hold of my neurologist and see what he says - but not to panic and run out to get her levels checked or anything...but other than that he wasn't very helpful and I was kinda bugged by some of the other things he said. Eventually both my pediatrician and neurologist called back..the neurologist says its time to increase her dose of Keppra - so that is our next move, but we have to figure out if I can still give her crushed pills or if we will need to switch back to a liquid solution (YUCK!).
My pediatrician had more to say about the reflux and malacia maybe being a cause or a predecessor to the blue spells. He wonders if these breath holding things are actually apnea and the lack of oxygen from them is what is causing the seizure, as that can happen. I had already for a while had a feeling that these breath holding things were not seizures but were a reaction to her pain from reflux or tummy issues but then caused a seizure at the end (I even had that written in my Abigail journal before I talked to him!). He taught me about two types of reflux and them possibly being the reason for this apnea spell. The first is obstructive reflux, which laryngo-malacia is an example of. Another example would be if the milk comes back up and blocks the airway, or if aspiration is occuring (aspiration is liquid going into the lungs) and blocking the airway that way. The other kind of reflux is called central reflux and that is just basically caused by pain - or results in pain - or something like that. Either of those could result in an apneic (?) episode. He is going to look into getting her an oximetry monitor - a 24 hour oxygen study - to determine if she is de-saturating (her oxygen levels are going down) or if she is going apneic and how often if either of those are to occur. This would be something we do at home, so hopefully if she is gonna have an episode it will be hooked up to the monitor so we can get some more information! He also suggested to take a closer look and see if right before the episode that her malacia labored breathing acts up..there may be some sort of correlation. At the end of that call I again felt like I had gotten a lot of "good" information and have been able to relax a little bit. But let me tell you - that seizure today wore both of us out! I had gotten so comfortable with no seizures that I let my guard down and this one really shook me up. Abigail is back to being herself - just slower, weaker, and more tired -- makes sense. Seizures are EXHAUSTING. She has, though, gotten quite a bit of sleep today! That's good too. So although having seizures suck two good things did come out of if - she was able to poop and sleep - both of which she needed pretty heavily.

Now I also know to not let my guard down so far as for the next 4 years a seizure could happen at any time for any reason, and that is AbiNormal. But also to not let that run my life so that I would change anything that I am doing. Just keep on keeping on. I am doing good, I am doing what I am supposed to and all that I can be.

Oh, Abigail. Honey.

 Such is life. Such is epilepsy.

This is AbiNormal