Oh, bugger.

In my last post I forgot to mention some details about the visit to the G.I specialist! Before I get to that I want to tell kind of a neat story. I had a P.T. appointment for Abigail on Monday the 3rd and had her G.I appt the next day - so I decided to just stay over instead of driving home that night to come back the next day. While I was hanging out around town I did some shopping- just because I could - and went to Old Navy. Abigail was having a day for sure, she WOULD NOT let me put her down. She was as happy and content as could be while I was holding her, but the second I put her down there was hell to pay. So while shopping and checking out I just held her to keep the peace. The lady at the register and I started talking and I don't even remember how the topic came up but I mentioned some of her isms, one of them being reflux and the lady begins telling me about some of the tummy troubles her daughter had and how she loved her G.I doctor, Dr. Kaddu and tells me all about how wonderful he is. Ironically, Dr. Kaddu was the same doctor I was to go see the very next day! I thought that was cool. She said his name and I was like, "that's who I am going to see!." Made me even more excited about the appointment tomorrow. Dr. Kaddu was indeed a very nice, genuine doctor. He mentioned sandier syndrome -which is something I asked the epileptologist about months before! I learned, however, that sandier syndrome is NOT a diagnosis, it is just a term that encompasses the manifestations that appear in the syndrome. Similar to epilepsy not being the diagnosis, rather just a term used for someone who has seizures. 

   Speaking of seizures-I am starting to think that Abigail is having seizures more often than we previously believed. I am almost convinced those "eye dances" I spoke of last time are in fact seizures..the only way to be 100% sure in an EEG of course, but I have since been able to get a few videos of it because it is happening more and more frequently. There seems to be a pattern with her seizures. I notice a behavior once or twice, it's not very frequent, then all of a sudden it is happening very often. The breath-holding things were the same way. At first it wasn't very often - I saw it once or twice then all of a sudden it was happening multiple times a day (although I think those are a reaction to reflux pain and are not seizures-but they have become more frequent again-just today she had a big one that resulted in a minor mini seizure). I noticed this eye spasm last week sometime-I'm gonna go with June 3rd as the first time because I'm not sure exactly what day it was-but it wasn't that long ago, and I know it was a few days before the 5th. Haha anyway, I noticed it once or twice and now it seems to happen several, several times a day. Last night Abigail woke up at 1am (she went to bed at 11-so I was very much not expecting it) but she was up and while I was getting set to nurse her, her eyes were going bizzurk! Non-stop, all over the place, very rapid, jerking movements until she got latched and settled down-then they stopped. But some of the videos I have of this phenomenon is occuring while she is calm-so it's not only associated with being riled up. I have yet to pinpoint a pattern or time this most commonly happens..at first I thought it happened when she was calming down, but ive seen some instances of it that prove that wrong. Sometimes there are no patterns to her behaviors, but other times we are able to find them. Such as before, we noticed her seizures mostly happened when she was about to fall asleep or just about to wake up, or after a breath-holding episode. There was one period of time that she would have a seizure every three hours regardless of what she was doing..literally we could look at the time and say "it's almost time" and within minutes she'd have one. 

     We have not seen any big seizures in a long, long while (with the exception of the "peek-through" seizure a few posts ago) but as of yesterday I started noticing a behavior she does very frequently that I wonder if they aren't at least infantile spasms. It is something she has done since I can remember and I haven't thought twice about it before. But yesterday I noticed some things about it that have some characteristics of seizures or spasms. Such as, it is all of a sudden, and it is kind of repetitive. It's hard to explain and so extremely subtle you may think I'm crazy. But when she's just hanging out her arms seem to be very actively moving around. They come up, almost like a startle but not quite, move to the middle, grab at her shirt, or open/close her fingers, all while "sucking" at the air-which resembles lip smacking with an open mouth...her mouth is always open. Haha. Ill try to post some of the videos I got. Again, to an untrained eye her arms may look just like a newborn moving around, and it may be just that! But since it happens so often, the same way every time, and seems to be involuntary I can't help to second guess. Idk. I may just be hypersensitive The eye movements are obviously AbiNormal, but am I over thinking the other subtleties? 

This is Abigail before when I was not holding her :

and this is immediately after when I picked her up: 

Stinker pot. 

This is AbiNormal. :)