[almost] a whole day!

     Oh, man do I have a lot to tell you! Abigail has officially been off of Topamax for 5 days now. Her last dose of 12.5 mg was given on the morning of September 10th, and starting on September 11th she has been having at least 2 seizures per day! ugh! And they have all been lasting about 5-6 minutes each. I don't know if I told you guys about the ones that happened on Labor day (Sept 5) and the day after (Sept 6) - but we were still on the Topamax and she only had one each of those days. She didn't have any again until the 11th at around 9:30am. This first one happened right after Abigail and I arrived in Cedar City. I was on the phone trying to get a hold of one of the teachers that I am supposed to observe this semester when I heard something funky from the back of the car, it sounded like a seizure! I looked in the rear view mirror and then at Abi and noticed that it indeed was a seizure - I pulled over in the parking lot of Staples in Cedar City (which is probably 150ft from her Abi-sitter's house) and jumped in the back to pull her out of her car-seat and hold her. Now, I don't need to hold her during her seizures, it doesn't change the seizure at all, just gives me some peace of mind. The seizure was a pretty big one and was still going at 4.5 minutes, that is when I started to get more nervous and started debating my options: Option 1 was to call the ambulance because 5 minutes is the "cut-off" for seizures when they start to get dangerous. Option 2 was to just take her to the emergency room myself.. I was in Cedar already, it wasn't very far away - but last time we took her into the ER ourselves and didn't call the ambulance her seizure lasted 40 minutes. The ER nurse told me to ALWAYS call 911 because the EMTs can administer the medicine needed, even if it takes them an hour to get to the hospital. So that is the option I went with, I decided to call 911. By the time the ambulance got there, however, the seizure was over but they were able to check her vitals and make sure all those numbers looked normal - they did. I called her neurologist and we agreed it would be fine to not take her to the hospital and just monitor her. I now had another choice in front of me: I knew she was going to sleep for a long time after that so do I just take her to class with me? Or do I take her to the sitters and let her sleep there? I did not want to part from her AT ALL but figured it was best to let Abigail have a nice peaceful, comfortable setting to go where she could be loved on instead of having to sit in her car-seat in a classroom setting..taking her to Veronica's proved to be the better option -Veronica was able to love on her and feed her and put her in a nice comfortable place to sleep. I figured this would be the only seizure we would see that day since typically that's what I've seen...but I was wrong. She had another one about 4:00pm right before we left Cedar City. Neither of these seizures followed a breath holding episode- she instead was just fussy.

    The next day (Thursday, September 12), same thing. Around 9 am she had a seizure (so we stayed home from school that day) and then around 4:30pm she had another one, neither of those seizures followed breath holding spells either. The one later in the day literally happened out of nowhere...We were both relaxing on the love-sac and she was calm as can be - then all of a sudden her head turned abruptly to the right and into a seizure she went. Following that seizure all the others came just as abruptly - she was either extremely calm or just a tiny bit fussy. Friday the 13th, Abigail and I made it to her Abi-sitter's house with no incidence. I dropped Abi off to Veronica and warned Veronica that due to the pattern over the last 2 days she will more than likely see a seizure that day (I dropped Abi off a little before 9am). Veronica is really good at keeping me informed of the 'happs' of Abigail during the day, but since I hadn't heard anything I was hoping that was a good thing, it proved to be correct. I went to pick Abi up and they were outside playing, Veronica said Abigail had WONDERFUL seizure free day (what a relief!). I had to go to some errands and from the moment I picked Abi up from Veronica's (noon) until about 2pm she was pretty fussy. She seemed so tired she couldn't hardly stand it..but at about 2pm - while we were in the Dollar Tree she decided it was time. She made it through Smith's just fine, but she was just done by this time. We left the Dollar Tree soon after, changed her diaper, then went home. I was hoping that since this one happened so late in the day that it would be the only one - but I was wrong again. She had another one later that night around 7:30/8pm. Yesterday (Sept 14th) Abigail had THREE SEIZURES! All before 5 pm. The first one happened at 9am, the second around 12:45pm (I had a feeling this one was about to happen - I was just looking at her and almost said "this is how she was acting last time right before her seizure" but before I could even finish my thought she went into it.) The 3rd one happened at around 4 or 4:30pm..Again, all of these seizures without a breath holding spell before them - most of them she's pretty calm, they seem to just happen. 

     Which brings us to today. I decided today to give her a Clonazepam in the morning. Clonazepam is a seizure medicine that she usually only takes at night but with the increase in seizures I thought it was worth a shot to increase the dose (I had already gotten the "OK" from her neurologist before we started the Topamax wean that this was a viable option if I felt it was needed). That is the only thing that I had done differently today than any of the other days (well, that and I (and her dad/sister) were around to hold her all day as well). She made it through church beautifully - not a fuss all three hours. Then we got home and the fussing didn't seem to stop..it wasn't bad - it was more like a sleepy fuss. I tried to lay her down but she just got more mad, so I went in and cuddled with her..she calmed way down, I fell asleep, but I don't think she ever did (I don't know though, as I was asleep-if she didn't sleep she was at least really calm). Anyway, she was off and on fussy all night and not sleeping. So all day she hadn't had a seizure, but she didn't sleep at all either. I could tell she was just exhausted so I laid her down in her makeshift bed in the living room and started putting coconut oil on her (she has been getting a rash lately, not sure why). She was a little fussy still and - out of nowhere - into a seizure she went, a little before 9pm. I picked her up and cuddled her but this one didn't last even a fraction as long as the others. She started with her particular "seizure cries" and I thought we were in for the long haul but about 2 minutes later I looked at her and she gave me this HUGE smile. She seemed to be out of it already. I started talking to her and she was still a little out of it, but definitely responding. I continued to put the oil on her and talking to her and you could tell she was just SO HAPPY. I took pictures so you could see what I mean. She was just smiling with her eyes from the moment she came out of the seizure. I truly think this one was a release for her, she just got so worked up and tired that her body just had to get rid of it all. Now she sleeps. 

   So although we've seen A LOT of seizures in the past few days, I have also seen A LOT of growth and A LOT of good things in the sense of her seizures not setting her back too far, if at all. She has been eating SO MUCH since we took her off of the Topamax (that will make her Grandama Heidi happy to hear). She seriously is always hungry and can down like 8 or 9 ounces in a feeding. She even ate 6 oz for her Abi-sitter on Friday, and Abi [for some reason] doesn't eat much for her sitter. The last two days I have put size 3-6 month outfits on her, AND THEY FIT! They were dresses so it would have been okay for them to be a little bigger, but they weren't! They fit her really well! She seems heavier now, and chunkier. Her little thighs are finally getting rolls. When we weighed her last for the WIC program they weighed her in at 14lbs! That would be so cool if that were truly the case! -- I'm thinking their scales were just calibrated a little differently, but hey, I'll take it! 

   As always you take the good with the bad and the bad with the good. Overall, she seems to be handling it all so well. In between seizures she acts like her self and is still pretty smiley and social. Her head control is still lacking but I've seen some slight improvements there too! I told my Neurologist about the first one on the 11th but he doesn't know about the rest yet. I sent him an email, but since it was the weekend he was out of the office..I'm sure he will get back with me tomorrow about what he thinks the next best course of action is..I was thinking we would probably start the other medicine, called Trileptol, but if the increased dose of Clonazepam is going to work then we may just stick with that. Who knows? I'll let you know when I do! 

Anyways, I'll let you go for tonight. Thanks for sticking through this one, I know it was a long one! Thanks for reading! 

This is AbiNormal!

Big, smiley, eyes :)