[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 :)

Today makes 5

     Abigail had a WONDERFUL day at her abi-sitter and early intervention eye appointment! She was following the items fantastically and responding to sounds without any delay. It was so good to see her responding/focusing/following so well, it definitely gives me a lot of hope for her progress! The abi-sitter (what my dad calls Abigail's babysitter) said she was SO GOOD today, not even ONE fuss ALL day! AND she wasn't even being held hardly at all until the end! Veronica (the abi-sitter) said Abigail hung out in her bouncer outside just happy as can be for about a good hour while she (Veronica) was able to clean out her fire pit. I LOVE to hear when Abi has good days because I have the absolute hardest time dropping off a fussy baby and knowing it was a tough day for Abi and her sitters. I just feel so guilty about it - I don't have too many options right now though - so when I hear days are easy and happy like today it really makes my heart feel good for Abi and Veronica.
    She did really well in the car ride again, except today I had to stop and change a poopy both ways! The first time I even needed to change her outfit! She hadn't even really started her day and she was already needing a costume change! But, oh well, as soon as the poopy was changed she was back to be happy as can be. Once I got her home things changed a bit..she got a little fussy again and I wasn't sure why - I fed her 4oz and she ate ALL of it (the abi-sitter said she ate all of her bottle earlier that day too!) but was still fussy, I then finally noticed she was really sleepy - she slept most of the car ride home (minus the part where she, you know, messed herself..she fell asleep again for a good 45 minutes - I got a lot of laundry done! After she woke up she was again pretty fussy unless she was being held or at least entertained. Eventually, Abigail, Olivia, and I went to the store and I guess going outside/going on a walk was just what Abi needed because after  we came back she was able to sit in her bouncer for quite a while just content as can be while I got dinner ready..I actually forgot she was there at one point in time she was so quiet! After about 20-30 minutes though she decided she was done with her bouncer and it was time to be held again. I held her through dinner, then put her down one more time to clean up. Immediately she started fussing, but it wasn't anything bad so I continued doing what I was doing. The exact same time that I was done and ready to go pick her up again she got REALLY mad, and went into a breath holding spell....a long one...and after it came....you guessed it! A big seizure. This one only lasted about 2 minutes, so it wasn't as long as some of her other big seizures, but it wasn't just the stare off to space one. I didn't get it on video even though I could have, I just didn't figure it was necessary since it looked like her other ones. I know it's not my fault at all, but I can't help but think if I had picked her up sooner would she not have gotten so mad and had a seizure? It just drives me nuts. But now she sleeps (like always). She's been asleep for almost 2 hours now, so any minute she will wake up ready to eat, I'll feed her then she'll probably go back to sleep for the rest of the night. Tonight's seizure makes 5 since we've started the wean of topomax back on August 19th. I don't know how many is a sign we need to put her on another medication again? I mean, they still aren't really consistent at all and are still fairly infrequent. I guess I'll just mention it to her neurologist and see what he has to say.
     I guess overall, today was such a good day minus the little hiccup. She did some really cool things today at the eye doctor! She even was hitting the iPad screen with her fist (more than once!) I'm glad that I don't have to go to school tomorrow so that I can stay home with her and just make sure she's comfortable. These buggers really wear her out..and me too! Anyway, just a short post today - I wasn't actually expecting to have to write today so I didn't have much to say (although I did want to tell you about the AWESOME experience with the eye lady - So i'm glad I did that before I forgot!)

Thanks for reading!

This is AbiNormal!

Yesterday at the Doctor's...

     Yesterday was the first day Abi and I went for a check up that I didn't have a long list of things to ask about/need to tell him! Everything is going pretty smoothly, I think. Yes, she did have a seizure the day before our appointment, but it wasn't anything I haven't seen before..and nothing we are worried about. She weighed in at 13.11 lbs! I was really hoping for 13.5--but I guess that's close enough. She still isn't "on" the curve but she is following it, so that is a plus! Her length is 26", which moves her up from the 6th% there to the 13th% in length.  I don't remember her head circumference, but I know that it was between the 10th and 15th% percentile. So her head and length are on track, we just need to get that weight to catch up! We have been fortifying her formula for so long but it seems as if she just takes in less in each sitting to offset the calorie burst. We have started giving her pureed fruits and it looks like I am going to have to be less lazy and start pureeing them myself  (instead of buying them pre-pureed)to get the increased calorie count. I was also told coconut oil is a good, nutritious, safe way to boost calories (and good for pretty much everything else too!)
     The doctor did say two very scary words to me yesterday....he mentioned the possibility of a feeding tube down the road. It wouldn't be permanent and we aren't there yet, but if her weight stays down he would suggest that to use just as a supplementation tool to get her the calories in that she would otherwise need and won't take in orally. Oy vey. I really don't want to get to that point so I want to get her adding some good, healthy calories. He thinks (and I agree) that her head control is mostly due to her low muscle tone, however, if she could get her weight and head size to be more proportional that may help get it to stabilize a little easier. We have kinda of hit a plateau with her because of her head control. There is not much progression she can do without having a steady head. She is progressing mentally, I think, in the sense of getting a little more comfortable with the world around her, and progressing socially as well..but physically she still has some catching up to do. Her head control is definitely getting better and more stable, but we still have quite a ways to go.
     I truly believe though, that she is just the best baby. I mean, considering what she does daily she takes it all so well. She travels with me in the car 2.5-3 hours a day (sometimes more!), and she (up to this point, knock on wood) has traveled SO WELL over the mountain. I think I have had one trip where I had to stop and calm her down, other than that it's been smooth sailing..or, I guess, driving. She has multiple medications she has to take multiple times daily and she takes them down like a champ...there are always exceptions to the rule where she doesn't want anything to do with the medicine, or its not going down as smoothly as usual...but MOST of the time she just takes it right down with little to no fuss at all. She's been sleeping through the night consistently and if she is not stopped up, hungry, tired, or bored she is just a little ball of happiness..such a sweet little babykins. How did I get so lucky??

This is AbiNormal.

oh, yeah, I don't remember exactly what it was that we discussed (the doc and I) but there was something else that we figured out yesterday that Abi did that was Abnormal even for an abnormal condition like hers---but that's what makes her AbiNormal. This girl--she's truly one of a kind. ((i'm pretty sure it is those dang blue spells that no-one can figure out why they are happening, what's causing them, or why some result in seizures and others don't, even of the same magnitude.))

Oh! 2 more things-she seems to have picked up eating a little bit. She had 6oz for breakfast then 4oz 3 times since we left the babysitters house (it as my dad calls her, the abi-sitter :)). Also! The abi sitter said she had a wonderful day! She was just happy all day and even fell asleep without even fussing! 

Sleepy baby

    Abigail had another seizure today. It was right as we were leaving Salt Lake to head back to Orderville. Last minute we decided to go up to Salt Lake for the long weekend, and overall it was a success. We showed up into Saratoga Springs at Abi's uncle Erik's house and had the second ever "hungry bros feast". It's a dinner where we get food from all sorts of places (chinese, pizza, tacos, chicken wings, etc) and have a smorgasbord of tastey's. What a way to start the weekend! Abi seemed to be in a good mood most of the time up there, even on the way up there! She ate most of the feast!! Just Kidding, she actually hasn't been eating a whole lot lately - just about 2-3 oz here and there. In the morning she still eats 6-7oz upon waking up but after that her meals aren't very big. I'm not too worried yet as she doesn't seem to be starving by any means and I figure if she's hungry she'd let us know. We will get a weight check on her tomorrow at her pediatrician appointment so that will be a telling factor also, but she seems to be fine. She is still sleeping really well through the night. She's actually been taking more naps lately too - so she may not be doing a lot of growing now, or maybe she's doing a lot of growing in her sleep? I just barely this second had a thought that it *could* have something to do with the topomax weaning? I mean, that is really the only thing that has changed recently. That and we started her bicitra again after about a week of not having any. So who knows, but overall she still seems happy and calm so I'm not stressing over it just yet.
     But back to the seizure, I had her in her carseat to run a few errands before we left town and she was happy as a clam just chilling there smiling and cooing and loving life - I'll be honest, I was a bit surprised how happy she was in her carseat, but I just left her alone for as long as she was content. We got back to the house to pack up the car and her uncle McKai (aka bubby) was being so good and keeping her company while we were doing that. She seemed to be loving it. Right before we were finally ready to go she got a little fussy, I thought maybe she could be a little hungry and just want a top off, but we'll get to that in the car - once we get moving, she'll be fine. I picked up the carseat and started walking outside and she calmed down and even was back to smiling as I buckled her in and was talking to her. Then we started moving and she just threw out a big scream and into the breath holding fit she went. This one was a long one. End result, big seizure. The seizure was a bit longer than normal too at just about 4-4.5 minutes. The hardest part of her seizures is telling when she is out of them because she's just so out of it but her breathing is still so rapid. I got a video of this one too (be it upside down, but a video none the less). We stopped to get gas so I could change her diaper - as her bowels let loose after a seizure and anything that was up there comes rushing out - and off to sleep she went. She slept a good 2 hours (which is very normal after a seizure like that) and then woke up - ate about 2oz and then back to sleep she went. She woke up again about another 45-60 mins later - we were really close to home - about another 30 minutes - but Jaren had heard good things about this restaurant we were about to pass and we decided to stop and eat..Abi could really use the break from her carseat too. We all enjoyed dinner at Sonny Boys BBQ (i'm pretty sure is the name) - Abi even ate another 2 oz and then we got back on the road. The first 15 minutes Abi was cooing and smiling again! I love to hear a happy baby. After that she started getting a little fussy again and was able to find a little more sleep until about 5 minutes out from home.
   We finally got home and she was mad mad mad. She had had a few more breath holding fits in the car before she was able to sleep either time but none resulted in another seizure. (Thank goodness). Well, I took her out of her carseat and she calmed down relatively quickly. After getting the rest of what I needed from the car at that moment I laid her down on my chest while I did some homework and we chilled there for a little while. I sat her up and played with her for a bit and she was smiling again but then I noticed she was getting sleepy AGAIN! So about 6/6:30pm (the seizure happened at around 12:30/1) is the 4th time she's fallen asleep today. I know sleep is good for babies, and really normal after having a seizure, or I would be really worried. Also, the fact that while she is awake she isn't completely out of it is good to me too, that she seems to be herself when she is up - just a little more sleepy - therefore a little more fussy. I let her sleep until 8:15 when I finally woke her up to give her her meds and some more food. (I tried about 30 minutes before that and she was OUT I was picking her arm up and letting it fall, and talking to her, and patting her belly..nothing..so I let her be a little bit longer) After she woke up and took her meds she ate 3 oz (fortified (extra calories added)). I figured she would be up for a while, but I was wrong..she went right back to sleep! It is now 9:51pm and she is still sound asleep. I'm thinking I had better get to sleep sometime in the near future because I just know she is going to be up in the middle of the night wanting to eat.
   That is our day in a nutshell. The weekend was good though overall. Abi was so pleasant.

This is AbiNormal

Oh yeah-I noticed something kind of crazy today after her seizure. I realized that the last 3 seizures she's had she was wearing the same onesie! I'm not sure I'm going to put her in that one anymore..I noticed it when I was uploading the video of her seizure to YouTube (if any of you are interested in seeing the videos let me know, I will send you the links to them) but in the video I got of her on the 21st and the picture on the 22nd and today she was wearing the same onesie! That's just too strange! 

Abi got hurt :( she fell out of her carseat and got a little bumped up. She's completely fine. The bruises went away that same day but she still has some scrapes - one on her forehead and one on her lip. Poor sweet baby girl. 

You can see the marks on her head, but later that same day she was just back to her old self. 

Sweet happy baby girl.