We made it! Merry Christmas Everyone

I didn't want to post yesterday to jynx anything, but we made it through all of Christmas Day at home! We didn't have to go into the hospital, or even think about seeing a doctor! She did have 9 seziures yesterday - which is about average - but most of the day she was happy! Very "smiley", mostly alert, the occasional cooing, it was a good day. Towards the end of the day she got really grumpy, but she also didn't ever get a full nap all day either, so she was just exhausted. She fell asleep pretty early, and I like when she does that because her medicine is due early(ier) - between 7:30 and 8:30 in morning-so I would prefer her to fall asleep early(ier) and wake up more easily for her medicine than me have to wake her up to give it to her, then she get angry because she is still so tired and scream herself back to sleep (and maybe have a seizure in there somewhere). This morning we woke up for meds around 8:30, she ate around 7.5oz then we both fell back asleep until 12:30pm!! What a wonderful treat! She was still sleepy after her bottle, and I was okay with that because I was also so exhausted from the past few days. After we (finally) woke up, I fed her again and changed her bum she was again happy! Almost all day she was "very pleasant" as her Grandma Heidi says it. I've seen more "smiles" (I put that in quotes because it's not like what we've seen before, but they are smiles none the less), heard a few more coos, and just overall a very content and happy baby. She has had 7 seizures today so far (she's had a few more very, very small ones that we didn't add into the count) but it's almost time for meds so I can expect one or 2 more before then...as I've said before 8 is about an average day, so we are not too worried about it, especially with how happy/content and alert(ish) she has been between them.
     I may have mentioned this in a previous post, but I started giving Abigail some Aloe Vera Juice in 1 or 2 of her bottles each day since I read that it acts as a natural digestive system repair, and i'm sure the most of you have heard about my iron rant and the desire to take her off of that to help her belly, but until I get the "OK" to do that I have tried several things to combat the belly/constipation issues that have been exhibited. The first was miralax, and that used to work wonderfully, but then I had to start giving her more to get the same effect (which isn't normal) until it became too much and the miralax was hurting her belly more than the iron/constipation was. So we stopped that. I have since tried pedialax which seems to work off and on, an I found an herbal constipation remedy spray that i've only tried once or twice so I don't know the effects of that, but Aloe has really seemed to help. I haven't given her a laxative since friday or saturday (can't remember) and have given her aloe since then and she has been able to pass movements - they've not been really big and are still really sticky/hard, but she has proven to be less irritable none the less. The only issue is Grandma Heidi made an observation that at first I shrugged off but then put more thought into so right now I'm testing it out. Abigail has been getting some really nasty rashes on her face that I can't seem to get to go away no matter what I put on it - eucerin, aquaphor, cetaphil, coconut oil, even desitin. They all have had their short term effects on the rash at times, but nothing that's completely gotten rid of it. (Surprisingly, desitin showed the best results of all of those though). Aquaphor has also had it's moments of glory, but Heidi one time simply mentioned that maybe it was the Aloe that was causing it. Like I said, I brushed it off because i'm pretty sure she's been getting that bad of a rash since before I started the Aloe, but now that I think back I can't remember. So I thought it was worth a shot to at least see if there is any type of connection. So I didn't give her any aloe the rest of the day, and haven't given her any today. So far her rash has not come back as badly as it was there before, but so far that doesn't mean anything. I have seen days of no rash, then it comes back full force, so for now I will hold off of the Aloe (unless I start to see belly issues again) and see if there is any connection between the juice and her skin rashes...I am still pretty sure she's gotten these types of severe rashes since before I started the Aloe Juice, but it's worth testing it out! It very well could be her medicine as well, we've seen that before with phenobarbital so it only makes sense it would happen again. We'll see, I'll keep you posted.
     BUT! I have some great news! I've been bouncing back and forth with the doctors about starting this new medicine called Potiga (I know I have mentioned it before) that has good positive clinical results in kids with the same KCNQ2 mutation that Abigail has. Since it is so new and they have never prescribed it they were very hesitant in even talking about it. After some annoying persistance on my end they finally agreed to look into it. Then we had to wait and make sure insurance would pay for it - so it's been about a month since I finally got the "Okay, we'll look into it more" until the "okay, insurance says it's a go you can pick it up tomorrow"! We are so excited. I found this wonderful facebook page with about 51 members who all have the KCNQ2 mutation (some have other diagnosises as well) or are somehow associated with this mutation - whether they have it, or know someone who does. There are several of them that are on potiga and have seen great things from it. One family is on Potiga specifically to help with increase in cognition. Their daughter has actually not had seizures for quite a while, but they started her on it for the cognition benefits - that's good news too! From the information that has been collected from our group - 8 people are on potiga and 4 of them are on ONLY potiga, nothing else! 2 of them are on Potiga and only 1 other medicine. That would be SO nice. If that's something that is even possible for us It would take a long long time to get there with weaning off the meds she is currently on one at a time. But we got the clear today from insurance and have high hopes. I am worried, there are some side effects that have been found, but we are hoping to get the results others have gotten. The last few days I've been keeping calm by saying that if Insurance will not cover Potiga then it meant that we weren't supposed to be on it, (of course I would fight and try again) but with the recent information that has surfaced about the asymptomatic RTA, I would also like to give Topomax another try. There are a lot of things I would like to "try" with her meds. I kind of think Potiga and Topomax (and maybe keppra) would be our silver bullet, but I'll work within the rules and just do one thing at a time.
     I also found out more information about the high CBD/low THC strain of cannabis oil and how to get a hold of that. There is an organization in California and Colorado called The Realm of Caring..They have been wonderful at getting back to me quickly with responses and answers and the next step of action. However, due to the way that the wait-list and plant harvest works in Colorado (I only looked into Colorado so far, not California yet) The earliest I could get my hands on some oil would be after October of next year, and that's if everything goes smoothly between now and March. I guess the harvest is every March and October so if you get all your paperwork in by October you can get in after the March harvest and visa versa - if you get all your paperwork in before March you can get in after the October harvest. So, I will still work towards getting the necessary paperwork for Colorado while also looking into how Cali and maybe even Washington state works. NJ is getting close to making it more accessible, but they still have a lot of hoops to jump through. Utah is still working hard at making it available here, but I feel like they still have a long way to go. Also, in Colorado, I couldn't go to a Neuro through the children's hospital there as they are not allowed to deal with the oils- I would have to find a private practice one, I guess, to get the questions I need/want answered.
    Anywho, I went on a rant and I didn't mean to. I intended this to be a short post about how me made it through Christmas with no hospital stays and how overall happy Abigail has been. That's what we like to see. I hope this means the Potiga will only help to make things better. Any information on causes/resistance to skin rashes would be helpful. Also, if anyone that reads this knows of any Neuro's that have dealt with CBD oils that I can get their information that would be even more greatly appreciated! Preferably CO, CA, or WA, but really anywhere in the US would be great.

Thanks Guys! I promise I'll get pictures up eventually!!

This is AbiNormal

Oh yeah! Abigail got to meet her Aunt Natalie for the first time yesterday as well! Abi really seemed to like her! :) 

I feel like there was something else I wanted to say, but I can't remember...I guess I'll add it in later if I can think about it. 

Thanks again! 

ABI IS A ONE YEAR OLD?!

     Today is Abigail's first official day as a 1 year old. I can honestly say that with even all the 'happs' of the last year for Abi and our family, it still went by pretty darn quickly. It's so bittersweet..I have learned so so much about Abigail's condition and Abi has made some huge progressions also. We've seen some of her potential a few months out of that last year, and even though we have seen some big setbacks in her progression we know what she is capable of and just have to find the medicine and therapy cocktails to help her reach her full potential, whatever that may be. There is nothing pointing to her not being able to progress or anything that would be a big roadblock (minus the seizures, but that goes without saying.) The Rehab doctor said she shows all the positive signs of improvement and likes the progress that she has seen. When we get back to reality after the new year we will start Abigail on Physical Therapy, Occupational Therapy, and Speech Therapy through Dixie Regional Rehab, as well as have early intervention PT/OT and Eye Therapy still visit us at home about 2x/month each. We will be very busy with those things, but they work! We will also see Rehab every 3-6 months depending on her progress and need. The Rehab doctor told me that as a general guideline if a child is sitting unsupported or unassisted by the age of two, then they expect them to be walking with assistance by the age of 5..that's wonderful news! We will work very hard with Abigail this next year on her sitting up by herself. She is already showing good positive signs of it!
     We can get Abigail to smile really well when she's stimulated in the right way (running with her legs, or swimming with her arms). She smiles with her eyes often too, but I can't wait until she starts smiling and cooing like she was back in July...Speaking of July, I really need to vent - Do you remember when Abigail had to go into the hospital in Vegas because of that prolonged seizure, and we ended up staying in the hospital for 4 days because the doctors there found RTA (renal tube acidosis) and wouldn't let her go until her blood acidity levels came back up to at least 15 (or maybe 16, I don't really remember), but either way. Then we decided to take her off of Topomax because that was the culprit of RTA and then that's when all the digression happened and leads us to where we are today? Well, putting her back on Topomax was not something I wanted to ever talk about during that time because I figured there has to be something else out there that will work just as well without the side effects, but never pushed it out as an option sometime in the future as she maybe got older and could metabolize the medicine better. Well, we are trying a new medicine soon, Potiga, that I am cautiously optimistic about, but am still preparing for the chance that it will not work and asked about Topomax again to our Epileptologist, Dr. Sweney (who is so handsome-not that that is important). What he said next made me SO MAD - not at him, but at the stupid Doctors in Vegas..and if you remember I was already so fed up with all of them there..anyway, after reminding Dr. Sweney that we took Abi off of Topomax because of the RTA this was our conversation (loosely as I don't remember word for word or the exact order) DS = Dr. Sweney Me = me
 D.S: "how bad was the RTA?"
me: "IDK, her levels were at like a 12 or something" ((The levels should be at a 20 - so it was very low))
D.S: "they only found it through lab work? Were there any symptoms [of RTA]?"
me:  "what would the symptoms have been? What are the symptoms of RTA?"
D.S: "Just really lethargic"
me: "NO! She was FANTASTIC - so happy! smiling, cooing, playing with her hands, alert, responsive, etc!"
D.S. *rolls his eyes "asymptomatic RTA is not a big deal - they just found it through lab work?
me: "yeah, she went in because of the seizure but then stayed until her RTA came up" (then I expressed my frustration of how much bicitra they had her on)
D.S. "I've never heard of a doctor using Bicitra for RTA from Topomax - I wouldn't have done anything for asymptomatic RTA"
me: "ugh that makes me so mad because they kept me there for 4 days over something I KNEW we didn't need to be there for! And then she was taking 11mL of Bicitra 3x/day! ugh! So Topomax is something you would try again?
D.S. "definitely, if Potiga doesn't show us what we want then Topomax is totally on the table for me"

I cannot express in words the amount of frustration that has been brought to the surface about that stay in Vegas due to that conversation. Remember how many times they had to stick her? And how many blue spells she went into during each one? And how the doctor wouldn't talk to me or let me listen in on their rounds about Abi? And how the doctor wouldn't answer my questions, and talked down to me? I expressed to him SEVERAL times that I did not think we needed to be there and I wanted to leave but I was stuck until Abi's numbers came up - then learned that it wasn't even that big of a deal! She was ASYMPTOMATIC - it wasn't even affecting her! She was at her greatest and we took her off the only medicine that showed such great effects because this arrogant doctor refused to listen to me or take any of my wishes into account. ugh, ugh, ugh. It just makes me sick to my stomach. The only thing I have to think is there is some sort of reason the sequence of events went as they did. Maybe we still had more to learn about Abi, maybe there was something else deeper that was being affected, maybe continued use would have created a worse situation, maybe we needed to get her off that to realize there were other, better options out there....but maybe not. Topomax was working and I have not seen Abigail back up to the level she was when she was on Topomax back in the summer. It just kills me. But! We will try Potiga and if it works the way we would like it to then in the end it is a wash. Or if it doesn't work the way we want it to we give Topomax another try and see if we get the same results. Maybe it wasn't the Topomax at all - maybe it was just her (doubtful because it was obvious that when she was on the Topomax things were fine and the day after we gave her her last dose of Topomax her seizures came back and that's when the down-slope started) Anyway, rant over, I just had to vent about it. Get University Medical Center out there with the AWFUL reviews. I wish I remembered the doctor's name so I could get his name blacklisted! No, I'm sure some people out there have had a wonderful experience with him, but for Abi and I, he is just NOT the doctor for us. Okay, really, I'm done - back on to happier things....

ABIGAIL IS ONE! She is happy and mostly alert, her head control is coming in and she is getting so big! (Maybe that could be why we needed to get off of Topomax to get a little more meat on her bones!) She is just under 18lbs now and 27.5 (maybe 28.5) inches. She looks healthy and seems to still be progressing. She is eating solids, mostly by bottle, but can take a spoon at times - she used to take the spoon really well so I know we can get her back up to it. I know she's got it all in there somewhere, we just gotta work with her to get it back, I'm not worried. She could still be so much worse than she is now although there is much work to do. She has so many people that love and care for her its fantastic and that alone gives her an advantage, I believe. I'm so blessed to have this little lady given to me, she is wonderful. She honestly is SUCH a good baby. Especially with everything she has to deal with she is just so sweet and easy going and overall happy. Like I've mentioned in a previous post, she is still battling tummy issues, and seizures, which makes her pretty irritable at times - but understandably so! She's amazing. One of her Aunts once talking about how strong she is said "she's all the avengers rolled up into one tiny adorable package" I love that! It's so true. I can't even imagine what she has to go through but she takes it like a champ!  Anyway, I promise I will get pictures posted ASAP.

This is AbiNormal! Love this girl.

Time to play Catch-up!!

Can you believe it has been 2 months since Abigail was discharged from her most recent stay at Primary Children's? I said I would post when we got home, but that never happened. Every day I thought "I really need to do that"..I'm really sorry about that!
     Not too much has changed though since October. Abigail is still having on average 8 seizures a day (sometimes more, sometimes less). She is overall pretty calm but we are still battling tummy problems. I really hope we can get her off of the iron supplement she is on and see if that helps with the tummy and constipation issues. We started her on Iron back in August because she was having those breath holding spells, if you remember. Her Iron wasn't low, but it was on the low side of normal and sometimes low Iron can cause those spells I guess? The pediatrician didn't think that was the cause or would be the cure, but we decided to try it anyway....now I am more than ready to get her off of that..It's just a pain now for everyone, in my opinion..but what do I know? I'm just the mom. I've mentioned it to her pediatrician on several occasions and each time he tells me that it takes a few months for the Iron supplement to make a difference because we have to give time for the bone marrow to make new red blood cells. But in our last visit I asked if we could get a level at her 1 year check up and if the numbers look right to take her off of it, he said okay..we got her levels checked 2 days ago and I called Dr. Larsen (her pediatrician) to leave him a message about the levels being sent to him and to take a look due to how anxious I was to stop giving it to her. Dr. Larsen is wonderful, we love him as a pediatrician for Abigail and I think he's probably really annoyed about me asking, but I really want to get her off of this silly stuff! It's gross, it's not doing anything, she hates taking it, I hate giving it to her, and it's most likely the culprit of her constipation and tummy issues! If we take her off and she still has all those tummy issues and/or starts having breath holding spells again then I will know I was wrong and put her right back on it...but for now I REALLY want her off of it.
     Actually, Abigail has recently started holding her breath longer at times while she is crying, but it's not the same as before, but I'll keep my eye on it still.  
The meds we are currently on are: Vimpat, Keppra, Prevacid, Gabapentin, and Iron. We have recently taken her off of clonazepam, per my request, and there hasn't seem to be too much change in seizure activity or anything once that was cleared out of her system. Abigail has started having some sort of "twitches" though that started slight (about a week before thanksgiving) and have become more prominent and seemingly more constant. Last night as she was falling asleep she easily had 100-150 twitches before finally falling deep asleep. They don't seem to bother her really, like she doesn't get upset or angry when having them, and as far as i've seen doesn't seem to have more after she's been angry or upset..They do, I think, tend to be more common around falling asleep though. She also just recently, within the last 2 weeks, has started waking through the middle of the night with crying/screaming. If I leave her be she will go back to sleep and will sleep in until pretty late but it's still new, and not necessarily cool. I would have never connected the twitches to coming off of clonazepam before Thursday after talking to Tanner, someone who also has seizures (he's 28, so a little older than Abigail) but he is also on Keppra and Clonazepam. He said the Clonazepam helps him with twitches like that. I explained a little bit what Abi's looks like and he said that was very similar to what would happen to him and even would explain back to me things I've seen that I didn't mention. IDK - maybe I'll mention it to the doc and see if that's something he thinks may be a correlation as well...I did mention to twitches to him a while back but haven't been able to get a good enough video to send him to show him what I'm talking about. It happens so often you would think that is something I could do, but it's harder than it sounds.
     We are starting a new medicine, Potiga, within the next week or two also that I may wait and see what and if that helps with any of these things before worrying about it. Like I said, the twitches don't seem to bother her, and I just don't know if they mini seizures or closer to the myoclonic jerks that she has always had while falling asleep..or if they are something different entirely. I would like to see them go away, but I don't feel them to be a pressing concern just yet.
    About Potiga though, we have high hopes for it, but are being "cautiously optimistic" because it is still a new drug and there is still much research to do on it. But there are several accounts of parents using it and it working wonders with their children (who all have the same genetic mutation as Abigail). We do still have to be cautious of two bigger side effects of urinary retention and retinal detachment...the second one sounds way more scary than the first, but every 3 months or so we will go in for an eye exam to be sure things are still looking on the up and up there. I have only talked with one parent who has seen any side effects from this drug and it was the urinary retention, which essentially just means they can't pee. The doc said this is more of an inconvenience than something serious, but if left unnoticed or untreated it can (obviously) become serious so just to be on the look out for decreased urinary output. We are getting Abigail in on a trial with this medicine so what we see with her will be on the books! That's kinda fun, huh? I also have heard from one parent who's child was put on this medicine specifically for increased cognition. That their child hasn't had seizures in quite a while, but was put on potiga for the cognitive benefits - I like to hear stuff like that! Medicinally, I would love to get Abigail off of gabapentin (which we already got he 'OK' for and have started to wean) and Iron. If all seems to go well with Potiga I would also love to try to decrease her vimpat and keppra doses as well. Getting her off of those completely would be phenomenal, but I don't think that is realistic by any stretch, so a decrease will do. I would love to have Abigail on only 4 medicines instead of 6 or 7 (Right now she is only on 5, but that is because we took her off of clonazepam).
    My TRUE desire is to try Cannibas Oil with Abi..it's absolutely killing me how badly I want to try it. The doctors won't even talk to me about it since its so 'new' and not even obtainable here in Utah..although there is a big push for it everywhere. I have been trying to find Neurologist's information from Colorado who I could get involved with to try to see if it's even something that would be a viable option for our particular situation, but that's presenting itself as a bigger challenge than you would think also. In due time, I guess, but i'll just keep trying.
    In summary:
- We are in the process of playing with Abigail's medicines (still/again) to find a cocktail that works until I can get my hands on Cannibas to try that.
- Abi's seizures have plateud to about 8/day
- Abigail has periods of being very alert, playful, and strong. We are working on getting her to sit up and sometimes she does very well with that.
- Despite some tummy issues and continued seizure activity, Abigail is overall a happy baby.

Thanks for keeping posted! Pictures to come next.

This is AbiNormal

We're outta here!

As of where we are right now all the paperwork from the docs is done on their side. Now we just wait for her meds to get filled at the pharmacy and get the papers here for me to sign! 

Abi is doing really well-she's still having a few seizures a day-but she's awake and more alert than she's been for the past two ish weeks-and not angry-so we are doing really well! Thank you so much for all the prayers offered on our behalf! Our family is fasting for her continued improvement tomorrow if you guys would like to join! 

I'll let you all know when we are officially home! We will be staying in salt lake until Tuesday-the rest of our fall break! Let's hope we won't be back in the hospital before that! Thanks again!

This is AbiNormal

Yay! We're going home!

Another day, another IV

10-18-13 9:30am

Today Abigail is supposed to get an MRI today just to be sure that there is no structural connection to the stronger a-symmetry from the left side of the brain shown on the EEG. The nurse just came in and said that she will get it today, but since the nurse practitioner that was supposed to be the one to sedate her didn't have the right "qualifications" to deal with her disorder and reflux issues they had to call in the big guns-an anesthesiologist-but since that change has occurred the MRI would be pushed back to whenever the big dog has a minute to squeeze her in. So now we just wait. Abigail has been sleeping all morning-she hasn't had too many seizures yet, which is good, but I'm surprised she's still sleeping. She did wake up angry at 4:00am, she was really warm and was sweating pretty good we took her blanket off and adjusted her position in bed. The nurse checked her temp-it was 37ish•C-about 98.6•F. Since she was awake the nurse decided to check her vitals and flush her IV to keep it good for the IV in the morning. She noticed during the flush that it seemed to be painful to Abigail and that her arm (that had the IV) looked bigger than her other arm. After talking to another nurse they determined the IV had infiltrated and was no longer good-so they called the IV team in--booger! Took them 5 pokes to finally get this one in! It went in the foot and was very "positional" meaning if her foot wasn't straight/pointed it would become "occluded"..if and when that happened the machine would beep and all we had to do was straighten or point her foot and all would be well-so after waking up hot, she got bugged with vitals-then had to get poked over and over-it makes perfect sense that she would still be sleepy..but not necessarily this late

    It's very bittersweet to me that's she's still sleeping because she hasn't really eaten since 4:00am (she had *maybe* an ounce of apple juice around 6 but because the MRI was scheduled to be earlier she wasn't allowed to eat milk past 4am and clear liquids past 8am). I would figure if she woke up now she'd be starving but I couldn't feed her because we don't know when she will get in..but I also don't love that she's so sleepy..but I hope she stays sleeping until I can get her fed so she's not so uncomfortable. 

10-18-13 12:40pm

The anesthesiologist just came and talked me through what was going to happen and had me sign the consent forms. I love getting to work with anesthesiologists just because my bro-in-law is in his second year of residency for anesthesiology-so it's fun to picture Tim doing what these guys are doing. The anesthesiologist we got had been doing this for 35years! 

10-18-13 1:00pm

Time to take Abigail down to get her MRI! I can go down and watch them sedate her but then they kick me out until time to go feed her after all is done. It will take about an hour they said. Now we just wait.

10-18-13 2:30pm

Abigail slept all the way until after the MRI! I mean, they did sedate her during it-but idk they would have needed to with how well she was sleeping! Haha darnet! It was kinda funny-she was totally calm and still until they put the mask on her with the anesthesia-she did not want to breathe in that nasty smelling stuff! Haha she was still sleeping (well-her eyes were closed) but she was fighting them pretty hard! She's so opinionated! I think that's great! The three there working with her were very funny, and nice, and just down to earth overall. I told them she's a fighter and she knows what she wants (or doesn't want) they laughed and said "we usually win"-that made me giggle. They told me about this one 8 year old boy though that did NOT want it and they almost didn't win against him! They said it took like 4 of them to get him down. Haha-eventually Abi have up surrendered to the medicine. Once she was asleep that's when I was told that was where we spilt and they'd call me when she was done (which she is now). I went during that hour to visit Perrin and his family. He looks wonderful after his surgery-they say he's pretty swollen-but as to be expected after a surgery like that! 

Oh, yeah! When she got back to the room the nurse told me that during the whole thing the IV in her foot when bad and they had to place another one! She just got one last night! I swear she's had to get a new IV every other day since we've been here! That was seriously her 5th or 6th IV since we've been here, including the one we showed up with..I can't even remember exactly with how many there have been! I know for sure she's had one in each hand, each foot, and an elbow-now in her hand again..so I think 6. Hence "another day, another IV"

10-18-13 3:30pm

Up to this point Abigail has eaten just fine and been awake and doing great. Since the MRI was done so late and they wanted to be able to watch her a little longer they decided to keep her one more night here in the hospital, just to be sure. So we will stay one more day. 

10-18-13 4:30pm

MRI results are in-there is nothing showing structurally wrong with her brain-everything is very AbiNormal. Her brain is a little smaller than an average 9 months old brain would be and there is less myelination than an average 9 month old brain would have-but is right on for where Abi is-it is very AbiNormal-so that's good! We are still staying here for the night though. 

No worries-that makes me feel good knowing she is in good hands one more night. But there is no reason we won't get out tomorrow!

This is AbiNormal

Anesthesiologist and techs pre-MRI

Let's Blow this Popsicle Stand!

If all continues to go well we will be out here tomorrow! We have an MRI scheduled tomorrow morning around 10, after that we will be discharged! The MRI is just to be sure that nothing physical has showed up on her brain since her last MRI - chances are small there is, we just want to be sure since her left side is "worse" than her right side on the EEG - worse as in more A-symmetric. Overall, Neuro and Peds are happy with her progress and don't see a need to still be here.

With that being said, Abigail had 8 seizures today - that's just too many for me to feel comfortable with..We did double her dose of her vimpat tonight and will see tomorrow how things look by the time the MRI is done and see what we are looking at seizure wise there. The neuro did say it would take about a week before he would want to increase the dose again (outpatient) but I don't know if we stayed here a few more days to monitor her a little longer if they would increase it sooner seeing as how we are her in the hospital to monitor her. IDK - 8 is just too many - but if the end plan isn't going to change then there is no point in being here because we can play with the medicine at home. I'm just very apprehensive to leave with 8 seizures daily--that just doesn't sit well with me. It is a far cry from 40 a day - but we started with only 8 seizures a day before we ended up here in a state of encephalopathy! I just don't want to get to that point again! I did NOT like anything about that whole situation ONE BIT! I just don't even want to think about the possibility of getting to that point again so I want to stop it before it begins. IDK I'm still just so frustrated that Topomax was working so dang well and now we are having a hard time finding something, anything, to work!

Other than that she's beginning to act more like herself..the seizures aren't allowing her to be as alert as I would like to see and all of that - but I  can see glimpses of my AbiNormal

That's all I got for you guys right now - just a short update.

This is AbiNormal

I'm so Indecisive

(even though the two posts were posted on the same day, the previous post "a pretty good day" were events from 10/15/13 and this one is from 10/16/13)

I was so excited to tell all of her doctors that she was calming down and she just needed to get that crap off of her head and all of that, but then she woke up angry. :( She didn't really calm down at all until she had a seizure at 9:30 this morning. Now she is sleeping again, but you can just tell something is really bothering her. After our first chat with Rehab yesterday about waiting to start Gabapentin we decided that with how bothered she is here it wouldn't hurt to give her a few doses to see if it helps and then if I decide to try to take her off I can, it wouldn't have to be permanent so I said okay. She got her first dose last night at 7pm - so it's possible that part of why she was so calm was because of the medicine. I told rehab that she was angry for a little bit until we got the EEG off then she calmed down and I wanted to hold the Gabapentin again to see if she needed it...I said this to them before she woke up...but then when she woke up pissed and wasn't calming down we all agreed to try it again to see if it did make a difference. It was a very back and forth back and forth decision because I don't want to give her a medicine that she doesn't need but I also don't want to not give her all the breaks she could use because i'm scared to give her a medicine..you know? They all expressed how safe this medicine is and that, again, it does not have to be a permanent thing, if I decide I want to try to take her off I can at any point-it would only take a day or so to get her off of it. Bottom line, we ARE on gabapentin and I feel okay with that.

Also, a very interesting tid-bit..its very possible, even extremely likely, that she is going through withdrawals from her lack of clonazepam the last few days. Which makes sense because she's been so sweaty and shakey and mad -- another "DUH" - so Abi is now dealing with another thing that I, as a 24 year old, has never experienced. Poor thing!

It's so tough when there are SO many things that could possibly be bothering her to know whats the best call. I hate to make decisions based on the moment at hand because I hate the idea of covering up something that could really be the real reason she was upset. But where she is getting food in her belly, she has been pooping, her EEG is off, and, other than just being here, there is nothing that should be bugging her anymore its safe to say there's something internal that is causing all this discomfort - withdrawal totally fits the culprit, but brain irritability does as well. - The neurologist said today something that hit home - because I kept talking about how she was at home before the seizures, and comparing to how she was at home before all of this started to go down. He mentioned that it is possible that how she was before isn't necessarily how she will is now-any and all of these events could spark neuro irritability..which makes perfect sense. I was holding onto what we had going on at the end of this summer and that's not fair to her because I wouldn't be making decisions based on what she needs now.

I'll tell you though, those 2 hours of calm Abi were wonderful, her head control was right back to where it was before all of this. That's all that I got to see but that gives me some pretty good hope that she will bounce right back after we get all of these things under control!

I just hope the team and I are making the right decisions.

However, some good news! "Going Home" and "outpatient" were two words thrown around today! We will be here the rest of today and probably tomorrow but I don't think they see the need for us to be here much longer-I can't imagine not being out of here by Friday if all goes well with her feeding and seizure activity today. We want to monitor the next day or two to make sure her seizure activity doesn't increase at all (per my request) I told him the lapse time between getting with Dr. Nelson is just too much (although he is WONDERFUL and gets back to me as soon as he can, its still email and phone-tag). So i'm guessing we will monitor the next 2 days and then get the heck out of dodge! Woo-Hoo!

Yay for AbiNormal!

Pretty Good Day!

Apparently it's too hard to tell what the stronger A-Symmetry on the left side over the right side really means-on her first EEG they were both equally A-symmetric, but since being here her left side is 'worse' than her right side. Her right side is still A-symmetric, but her left side is 'worse'. Her most recent EEG before coming in here were looking better - not sure how, but that's what her neurologist said - and we aren't sure what events specifically could have changed that, but it has changed. So basically it's too hard to tell if her right side has gotten 'better' or if her right side has just gotten 'worse' from her first EEG. Bummer-oh, well...doesn't really change anything.

I tried to put her on her stomach to see if that would help - you know, because she likes to be on her stomach sometimes, and it totally did! It didn't last forever, but gave her a few minutes of peace and seeming comfort. It was so funny looking though so I had to take pictures! From one angle it looked like her face was buried in the bed! Really she was just resting her head on one forearm and her paci on the other. It was pretty neat! I haven't tried it today yet because Mamma Mia and I are here to hold her instead - but when we go get something to eat I will try that again.

GOOD NEWS! They have pulled the tube back to an NG tube (naso-gastral - food going into her stomach) today which means that she should start feeling full! So maybe we will see a little bit happier of a baby! They did want to be sure that I understood the risks of aspirating, but with how 'awake' she's been I don't think aspirating is too much an issue..I'm sure she will spit up more now, but like I said in the last post-she's been eating p.o. or "by mouth" with seizures for her whole life essentially. So, yay! Let's hope this does something to help soothe this sweet little baby.

10-15-13 11:58am - Abigail had her first seizure in a few days. Mamma Mia was holding her and I was getting ready to go take a [very due] shower..Mamma Mia was singing to Abigail when it happened and after it was all over and I changed her bum and handed her back Mamma Mia said "I'll try and sing one more time, but if she seizes again I'm never gonna sing to her again". That made me giggle. Poor mommy. (she was joking, but it was still funny!)

Rehab came in for a visit and mentioned some medicines for neurological irritability - the first one they mentioned - baclofen - I have heard of this medicine before, and actually was written a prescription for it back in May of this year. It is a muscle relaxer and with Abigail's already low muscle tone in her neck I decided against giving it to her. The next one - I don't remember what it was called - but it was a blood pressure medication - since Abigail hasn't had any issues with blood pressure I vetoed that one. The third one was Gabapentin - This one is a seizure medicine, but it not usually used as one anymore, its more used as neuropathy relief. This would be used to help alleviate some of her neurological irritability. I told them though that I would like to hold off until I could see where she would be at baseline. They said that would be okay.

Abigail had 3 seizures today - about 1 an hour, almost on the hour! 11:58am, 12:52pm, 1:53pm - they gave her a dose of her new seizure medicine - Vimpat or Lacosamide - and she didn't have any seizures the rest of the night (that I saw). I left for dinner around 5:30 pm and got back around 8 - when I got back her Grandpa Craig and Grandma Debbie were here! What a wonderful surprise! They said she was really calm for a good hour before I got back but when I got back she was really fussy.

Right after I returned I noticed her EEG head wrap was pretty much off, so I asked if they could call EEG over here to wrap her another one. The nurse said that Neuro had said they got what they needed so when the EEG hat/leeds fell off to just stop the EEG...so that's what we did - the EEG came off around just a little after I got back..You should have seen how badly she was SWEATING under that thing - PROFUSELY. It then clicked that she has a hard time regulating her body temperature and is usually more warm than cold, but when she gets really hots he gets really mad! DUH! That cap would have been keeping her so warm! Then she would get mad and get hotter and get madder then hotter, and the vicious cycle just continued. After we took the EEG off we started to give her a bath when the IV team came in (yes, again) to put in another IV because hers had fallen out (yes, again!) (IV's don't stay good for very long in babies because of all of their movement-and with Abigail's anger spells she was contorting every which-a-way) Anywho, it took them 6 STICKS to finally find the IV - to their defense, each stick went in and they found a vein, but it wouldn't flush-meaning they couldn't use it-that something happened and the vein shut them out. So the one team tried 3 times and then brought in Ryan (i'm pretty sure that was his name) and it took him 3 sticks to get it..but he got it! Abi wasn't too thrilled about that - but we finished her bath and got her dressed and she calmed right down. For the rest of the night she didn't even make a fuss! (until she was about to go to sleep, she then got a little fussy-but nothing bad, I just let her fuss herself to sleep because I knew that's where it was headed)

So, for rest of the night Abigail was impeccable! She was perfect. She was rooting very hard and they let me feed her through a bottle and she took it just fine! I only gave her 2 oz  and she seemed like she wanted more, but I was happy to be able to bottle feed her at all!

Overall today Abigail had a really good day - well it ended really good! She got her NG tube, she got her EEG off, she got bathed, and she had a good relaxed night! (We'll let the seizures and irritability throughout the day slide this time)

This is AbiNormal

Baby Hulk Syndrome (BHS)

I'm not sure if I've mentioned BHS in any of Abi's previous posts but it is a syndrome her awesome uncle Andrew discovered -It is a syndrome in which what Abi is trying to do is turn into the Hulk - but she's not quite able to transform yet, so what happens instead is she has seizures as a result. Sometimes these seizures make Abigail is very, very mad, like a baby hulk.Other times Abi seems to be mad at other things that are going on with her body - but either way, she is now our little "baby hulk".
She has been very, very angry/irritable since Sunday and  I don't know exactly why (she has not been having any seizures at all), but I can make some conjecture:

1. She has been placed on a feeding tube that goes through her stomach into her intestines (naso-jejunal or NJ tube) that combats/eliminates reflux so she won't aspirate-they did that while she was in her sedation state but have kept it in for other reasons I will explain later. They were going to take it out yesterday because she is ready to eat by mouth but then plans changed. The problem with the NJ tube as opposed to having the feeding tube go into her stomach (naso-gastral or NG) is that she gets the calories she needs, but she doesn't get the feeling of being full. So essentially, Abigail has not "eaten" since 11 o'clock Friday night..she's probably STARVING.

2. Until yesterday, she hasn't pooped since we've brought her here early, early Saturday morning. So for 2.5 days she was holding it all in - very constipated. I can't imagine the feelings of hunger and constipation make for a very good mix of comfort. They started giving her miralax in her feedings - but since she is still feeding through a tube it doesn't go through in one dose like it would through a bottle - so she only gets a little bit at a time - so even the first poops were little sticky 'skid-marks' - so they increased the dose and finally we got some good runny poops. We've decided to increase her miralax dose and split it to twice a day due to the lapse in time with the feeding tube. hopefully CONSTIPATION won't be something she has to worry about for too much longer.

3. The medicine she has been on includes: Phenobarbital, Ativan, Keppra, Phosphenytoin, and methylprednisolone (steroids) - all of which are all known to cause irritably - especially the steroids ("roid-rage") - so she's DOPED UP on anti-epileptic drugs that make her mad.

4. Increased seizure activity, even though she hasn't had any seizures in a few days, the fact that she did have so many days of seizing so frequently would also make her irritable. So her SEIZURE ACTIVITY may also be a culprit.

5. Add on all the other little things going on - every 4 hours they mess with her to take her BP and get her vitals and listen to her heart. And she's had an EEG on since we've been here, essentially, and with that EEG come leeds all over her head, and with those leeds she needs a head wrap, or cap (I call it a turban) to cover those leeds so she won't knock them off - I'd imagine all of those little things on top of already not feeling well aren't a huge culprit, but definitely don't help.

starving, constipation, drugged, seizures, and lots of bugging, I would say, all add up to allow her to be pretty irritable. The neurologist said "she's earned some irritability with all she's been through" - isn't that the truth!

Like I promised above, the reason they didn't take the NJ tube (that's funny for me to write being from NJ (new jersey)) is because yesterday morning they stopped all of her seizure medicines with the exception of Keppra - the reason for this is because they want to catch a few seizures on the EEG to be sure that everything we are seeing are indeed seizures and some of these posturing episodes aren't something else induced by some other neurological stimulation. They just want to be sure that they are not missing something and are giving her the proper medications - i.e. not giving her only seizure medicines if some of these "postures" are from some sort of irritability of the brain instead of a seizure.(she definitely has seizures, they just want to be sure that they are ALL seizures). Because taking her off of her medicine will cause her to have more seizures again, they did not want to move the NJ tube to continue the fight against reflux so she won't aspirate during one of her seizures. (I have mentioned several times that she is home orally feeding while having seizures - but they are just being cautious, and I understand) -- With that being said, I just got word today that they may move the tube back to an NG tube (into the stomach) today! They do have other patients eating "p.o" (latin for by-mouth) and having seizures, and she is usually eating p.o. at home, so they feel comfortable with her ability to be able to eat and be fine. Thank goodness! So now her constipation should be held at bay and she may be able to start feeling full again! It's up to the Peds medical team though (this was the neuro team talking about it), so it's not for sure that we are going to get to be able to give her that satiety..but I am ALL FOR IT!

We are going to be seen by Rehab today because they do feel like some of her irritability is not seizure related and that's where rehab comes in-I told them I have no problem being seen by rehab but I don't want to make any irritability judgments based on her last few days of being her because that is not normal for her. I mean, when she does get irritable this is how she acts, but it's never been this strong and this constant, that I can remember. I told them that I still would like Rehab to come see her, but I would like to hold off any new medications until we determine what are and are not seizures, get her on the proper medicine for that, get her eating and pooping again more normally and then make decisions from there-they agreed that is a good idea.

Even though it's been 24 hours since we've stopped all of her meds they are still in her system (they were very high doses) and we haven't seen any seizures up to this point. We will probably start to see them within the next 24 hours however as the levels of medicine continues to drop.

Neuro also mentioned that her EEG's are looking much better than when she came in (YAY), but still has that AbiNormal 'background noise' (which I expected) - However, her left side still has a stronger A-Symmetry than her right side, so when we get closer to getting her home they want to do another MRI to be sure there isn't anything on the left side that has maybe shown up that wasn't on her other one. They don't believe there will be, but again, they want to be thorough (and I appreciate that). I'm kinda hoping that means that her right side has already kind of "grown-out" of the seizure activity and now we are just waiting on the left side to do the same - IDK if that is even possible, or if it even makes sense. It wasn't something I had even thought about until literally this second as I was typing - but she is expected to grow out of her seizures around 4 or 5 years old and her EEG's before showed A-Symmetry on both sides, and now it's just the left - makes sense to an 'uneducated', hopeful mom! I'll definitely mention it, because now i'm curious!

She's been arching her back again a whole ton more lately - makes sense with all of the discomforts - but they don't love to see that. I asked them why it's so 'bad' that she arches her back and they said, it just shows us that something is bothering her and we want to know what it is. Even when she is calm though she arches her back - I feel like it's more of a learned response than anything else (right now it's definitely a response to discomfort, but normally nothing seems to be wrong but she will still arch) - he said it's possible it's just a learned response, but it could also train her muscles to extend like that in their natural/neutral position. So again, we will look into getting her on something for that - but potentially not until things seem to be back to her baseline.

Peds and Rehab will be back sometime today and will discuss what they find/think with neuro and let me know their recommendations from there-but that's all I have for you guys right now.

Thanks for checking in!

This is AbiNormal!

Pictures from our adventure!

Abigail on the stretcher ready to head to the ambulance 

The plane that brought us to slc

Getting on the plane

Chillin on the airplane 

Our pilot "Al" getting ready to taxi

Abi's life flight nurses-Ryan and....(I don't remember! Eek) but they were both awesome!

Here they are again

Just enjoying the ride-okay she's sleeping-but I'm sure she would have enjoyed it!

My personal favorite of all of our pictures-Abi talking to the tower "tower, come in tower, this is Beechcraft November 4 8 igloo hotel Charlie..."

Snuggling at the hospital 

I love this baby too much!

That's all I got for now! More to come with other posts I'm sure!

This is AbiNormal

The little engine that could

ABIGAIL HAS WOKEN UP! She's still very tired but she has opened her eyes and she is responding much better. She is stirring and fussing and has even been taking her pacifier! The neurologist says that her EEG is showing better reading in patches during throughout the day! This is all such good news. We are all very "cautiously optimistic" about the outcome of all this. I think that term is perfect. It's too soon to say she's completely in the clear but they are cautiously optimistic. 

They have moved us from ICU to the regular infant floor, which is awesome! A definite move in the right direction!-we still have 2 more days of steroids so that is the absolute minimum of how long we will be here-but it will be longer than that for sure. 

Only positive news today!! We love that! Grandma Heidi and Loren came to visit-it was nice to see them! We'll get to see Erik, Heidi, Nikki, Ryan, Craig and Debbie sometime soon too if we are lucky ;) hint hint ;)

This little baby is amazing. What she has endured is incredible and she takes it all so well. Sweet girl. 

This is (more like our) AbiNormal 

Abi and Grandma Heidi 

And we're back

10/11/13 10:30am

No, not back to normal, (I wish) actually back in the hospital. But there wasn't an emergency or anything it was just time to speed up, and really dig into this healing/seizure-control process and the hospital is the best place for that. We got here around 5:00pm last night. She had 6 seizures in the first hour she was here, then they loaded her with phosphenytoin and the seizures decreased to 3 in 3 hours. They are really taking good care of the both of us-my goodness is this place SO MUCH BETTER than UMC. Haha **((except I do have to admit now that UMC probably didn't have to be as bad as I made it-my attitude totally was not in the right place while I was there-I had so many extra stressors that trip that have never been present with any others-I was trying to get home to nj-I wasn't informed as to what was going on with Abigail, everyday they kept saying I might leave the next day-the nurses just didn't seem as nice and as caring-but, like I said, most of all my attitude towards it was way off-but oh, well, it still sucked-haha))

What's kind of really lucky is that Abigail's primary care pediatrician is the doctor on call this weekend anyway so he's going to be here all weekend with us! We will be here at least until Monday. 

So far since we've been here (about 17hours as I'm writing this part) they've introduced her to a new (short term) med that she's responded to, scheduled an EEG, put in an iv and took some blood-they've already had to poke her 4-5 times and that won't be the end (but Umc poked her every morning while we were there plus several others so we are doing okay. 

After the original loading dose of this new med (I don't remember the name-it's not something we will be going home with so it's not something I've internalized to remember yet) the seizures decreased significantly. When we brought her in (around 5:00pm last night) she had 6 seizures in the first hour, then after the loading dose she had 3 in 5 hours..much better..and they changed again in severity-they were almost too hard to tell if they were seizures or just stretching! But her lip does what I call "her Elvis lip" which usually happens during a seizure so that's what we went with.

This morning, though, her seizure count increased again and they are getting closer to how they were before, still not as bad, but we are thinking she's just metabolizing the medicine really quickly so we just will need to increase the maintenance doses. 

She's been sleeping all day-which isn't very different from the past few days-but she seems just a bit more comfortable overall. After the loading dose she seemed to show signs of being more alert again so that made me feel good to see. I've always thought she'd bounce right back after the seizures go back under control and that gave me a good hopeful glimpse of it. She was looking around more then than at any time in the recent past! 

10-11-13 5:00pm

I have never been so happy to see blood in my life! This baby is making it so much harder on her than she needs to! I know it's not on purpose but they've had to take blood a few times and the first few sticks she didn't even wince then as they had to take more the pokes got harder and harder for the nurses to get and she got madder and madder (understandably so!) anyway-the IV they placed on her fell out and they needed to place another one (she has just gone through 2 blood draws at 3 pokes each) so no one wanted to poke her again but we had to. They tried several times-several places to no avail. Once they got it in and blood starred flowing but then abi kicked really hard (every single nurse and doctor that deals with her is always so shocked/impressed with how strong she is) and the IV moved and so it "blew" (not the vein, the poke) and the fluid "infiltrated" the tissue instead of the vein. We were SO CLOSE! So we called in NICU to have them come try-same story, she got it (after one failed attempt) but abi kicked and pulled the needle back out. We gave her a break until we couldn't anymore and called in the big dogs-we called in anesthesia-even he had a first failed attempt-but his second attempt was a success. He used a deeper vein in her ankle-the sephorous vein-it is bigger so therefore better. FINALLY we got this stupid IV placed. Poor thing

**((All these pokes is what made me realize my attitude towards UMC was a big part of the problem because as much as I HATED that they had to keep poking her here to get that IV in, I was much more understanding with these nurses and doctors than theirs-whoops))

10-12-13 1:45am

This is coming at you real time! Live from the hospital (not live as you're reading it, but as I'm writing it) The life flight team just arrived (after hours of waiting)-we are moving Abigail to Primary Children's Hospital in Salt Lake because they have more and better resources for Abigail's worsening condition. We kind of believe she is in a state of "epilepticus" where she's in a state of just constant seizure. (We don't have her on an EEG so it's just conjecture based on what we are seeing and how continuous and close the seizures are.) THIS JUST IN! NO WAY! THE IV THE DR PLACED EARLIER (that is supposed to be super stable) IS LEAKING!! After all that fight and poke earlier the life flight nurse had to put in another IV!!! You've gotta be kidding! It only took two pokes for Ryan the pediatric life flight nurse. Well, it's Time to go! Gotta put this down for now..I sure wish I could put into words the amount of adrenaline I'm feeling right now and the amount of what's going on!

10-12-13 3:00am

We are on the plane now-just took off. I have such mixed feelings! I LOVE airplanes and flying so I am enjoying the flight itself, but Abi is just so out of it, I want to be holding her. Where they have me sitting in the plane is behind her and the way the stretcher is angled I can't even see her :/. She's pretty sedated so I know she is fine, but I just feel so helpless. Poor girl. I've decided though that I can totally see myself as a life flight nurse one day-totally right up my ally...  The flight should only be about an hour, we are on a fixed wing airplane-not a helicopter. This is the first time I've ever had to experience something like this-thanks Abi! 

I feel very comfortable in airplanes-it was especially fun for me to look in the cockpit and see all the numbers and know exactly what they all mean! Right now we are flying north at a level heading of 358, altitude 25,000-altimeter 30.04. Tail number November 4-8 Igloo Hotel Charlie. I bet we are flying a vector route but since I'm not looking at a map I couldn't tell you the name of it. I don't see any waypoints up on his gps, and it's night, so he is most definitely flying IFR (which would constitute a vector route). This is fun! Why does it gotta cost so dang much!  

"Salt lake control this is Beechcraft igloo hotel Charlie- we are flying northbound at a level heading of 358, altitude 25,000-altimeter 30.04." 

I can hear just slightly the pilot's condition report-information echo-0835z-that's all I could understand-I think I heard the altimeter setting as 30.00, but it is very hard to tell over the noise (I do not have headphones on) 

10-12-13 3:31am 

I just wanna hold her. Love her, give her a big smooching smooch and a never ending hug! This girl is so tough I don't understand. She takes everything she has to go through in such stride! Abigail-warrior-no, idr what it means but I remember it was something cool-not warrior though-but it should be. 

10-12-13 4:05am 

We've landed at salt lake international-BRRRR ITS COLD! Now I just ride in the cab of the ambulance. The driver is a mountain biker that knows spencer (my brother mikes friend) who's big into mountain biking. The gate won't open-the driver thinks the front gate guy fell asleep. Haha

10-12-13 4:39am

This whole night is a big blur-we are now at PCH in RM2304 in the ICU-there doesn't seem to be much going on right now because all of the nurses followed us in-pretty funny. 

10-12-13 4:46am

The dr just gave me a run down of what may happen and I don't love the sounds of it-we may need to dose her so much to essentially put her in a comatose state for a few days..how scary does that sound?? She may need to intubated for breathing if she goes down too far. Goodness. I feel kind of guilty that I didn't think to bring her into the hospital sooner-but I'm also SO GLAD that I followed my instinct to call my mom to come out here and take Abi into the hospital when I did..Coming to the hospital is such a tough call for me because how invasive they are with her and how much she obviously hates it and it's not always (or ever) a quick cure-my sister said it well "well when hospital visits havent cured her....its hard to rush into them i get it!" They seem to make it worse before they make it better-which I guess is how everything goes, and since Abi is looking pretty bad, I can only hope that means it's gonna get better soon! Dr Larsen believes also there is something out there that will work for her and not give her nasty side effects, we just have to find it. There may be one more level of worse before we get better but at least I know that's kinda how it works so I can always be looking for the light at the end! 

10-12-13 9:30am

Potassium channelopothy-a new term I like that describes what Abigail has

"Status epilepticus" - seizure that never stops-she isn't in a state of status epilepticus. 

Vs.

"Epileptic encephalopathy" -hyperactivity almost seizing all the time (smoldering fire) - still exhausting to the brain, still not allowing her to be herself. ((It is a state being that she is in now-not a constant condition)) a light totally just came on! I get it now! The first thought that crossed my mind with that information was "There's hope for Perrin! If we can just break through with him! I sure hope their surgery does what we all want it to! Now I just worry she's going to end up stuck in this state permanently-ugh my emotions are racing now! Now that I understand it better I get exactly what's going on..and that scares me more, I don't want her to get stuck in this state! Once she's out if epileptic encephalopathy things will get better. 

The doc just told me something interesting though, her left side is the culprit side and it's just affecting her right side-which isn't perfect, but not starting anything. I asked if It's like a big brother picking on a little brother and the little brother reacting..he said "kinda"-so close enough! 

10-12-13 10:00am

UA-urine analysis and Urine couture via one time catheter draw-first time for that-just to check for a possible UTI-something treatable that could help, so why not? It won't hurt for sure. 

**((Warning, this next section I was very emotional and very tired and freaking myself out-I had a mini panic attack and broke down a little bit--I put this in here reluctantly as it slightly embarrassing fb to me, but it is part of my experience and would like to have it for my records-but now I'm much better and back to my normal self))* 

10-12-13 3:45pm

I just got the scariest answer of this whole 9 months--I asked (and I'm wishing I hadn't) if Abi could get stuck in this state permanently and the doctor said yes. That when kids this young go into this state this early they sometimes don't come out of it. Doesn't mean she won't come out of it-but I hate that answer. I'm really wishing I didn't ask that question. I'm so scared for that to be the case! And I can't help but blame myself for taking her off that dang topamax that was working so dang well-she was progressing so far and so well-and also waiting so long to get her on another medicine/realize the seizure count was getting too high. I can't help but feel this is all my fault-that I could have prevented it from being this bad. The dr assured me that if a kids gonna go into this state then their gonna go into this state-but she wasn't anywhere close into going into this state until we took her off. I literally watched her deteriorate mentally in front of my eyes and didn't respond to it like I probably should have! As soon as the seizures got to 10 a day--especially 20-- I should have become more aggressive then. I feel like I waited until she was already in this state before I got the impression to take her in. I'm so so scared. I don't want this for her. Danget!!! Why did I gotta change what was working?? (It wasn't really working because it gave her RTA which was affecting so many other things) but now nothing is working! We've tried several to no avail! They slow the seizures down but aren't breaking the state of encephalopathy. Even her EEGS were looking better in August! Danget danget danget. I really made the wrong call here. 

10-12-13 4:30pm

Jeff an Jenna Corry showed up to give Abigail a blessing. It couldn't have come at a better time or been a more perfect blessing. I cannot thank them enough for taking time out of their day to come visit and do that for me. Jenna told me a little story of her daughter Allie at the conference center just before they came here that Allie wanted to make a wish on the waterfall and she wished so hard and at first the penny didn't go in so she ran to get it and wished so hard again and threw it in. She then told Jenna "I just really wanted to wish that little Abi will be okay" cutest story ever made me want to cry-I'm pretty sure I did a little bit. Jeff then gave Abigail a blessing that gave me such peace and such hope. He said essentially her brain will become clear and she will be healed. That she will "come forth and do the work she was brought here to do" and "she will be a good example for her parents" that she essentially will pull through this..I wish I remembered more that he said specifically, but the overall message was what I needed/wanted. That blessing honestly couldn't have come at a better time. He says that's what was just flowing through him and he feels that's what The Lord has in store for her..that he wasn't being biased, or saying what he wanted, but truly what he was inspired to say, and that's truly how he felt. I needed that more than anything at that moment. Immediately a "weight" was lifted from my chest and I was able to get right back to not worrying and being positive. 

10-12-13 7:42pm

My mom is almost here! Last night I had to follow the ambulance and drive my car to the St George airport for my mom so she could drive it to me in salt lake when she lands! Isn't she a saint? 

Not much has changed with Abigail except we haven't seen any seizures in a while-I still think she's in the state of encephalopathy but she hasn't had to be intubated yet. She is still breathing on her own with full oxygen saturation (just to clarify, there was never a time she was not breathing on her own) it's just something that keeps us all positive. Yesterday she was still taking a bottle-today they had to put in a feeding tube in her because she is just so worn out from all the sedative anti-convulsants..I'm hoping that's why she is the way she is right now over it being caused by the encephalopathy. I actually took a nap earlier today and woke up to them putting the feeding tube down her-I got a little nervous that they were incubating her because she was breathing so raspy that I thought "well, crap" but then saw the thin feeding tube line and liked that thought much better. They have a continuous video EEG running, which is good, but I just wish I could understand what it was saying!! Those crazy neuros and their gibberish EEG readings. Some other things they have done is loaded her with keppra, phosphenytoin, and phenobarbital-all sedatives. They are going to give her a steroid burst-but not the ACTH treatment, it is a more general treatment, the same steroids used for asthma and all that. They took some blood (from her heel-which is okay for this test) to test oxygen levels just to be sure the reading on the screen is accurate and where thy haven't come in and started oxygen I'm assuming what they found wasn't too scary. 

I think that's about all I got for you guys right now-I know this one is a doozy and has ALOT of information and crazy things happen-but it puts a good perspective on how my days feel-one long day from Thursday evening until now. 

Well, just kidding. Here are some things I jotted down randomly throughout the day as I thought about them to add in here somewhere, now seems like a good time as ever: 

-abnormal (AbiNormal) seizures-looking around/crying etc (funny/typical). Typically seizures are not associated with any types of crying or looking around and Abi's have been-so that's abnormal for an already abnormal behavior. That's kinda funny. 

-Dilantin is not working, and we have come off trileptal completely 

-large dose of ativan-knocked her out but she's still seizing..but the seizures are a little slower 

-I think I don't quite comprehend the seriousness of her disorder, but I think that's okay-it helps keep me calm, collected, and positive..I don't want anything to change in that regard (which is ironic that I had this feeling jotted down before I learned more and had the light bulb about her condition and then the scare of it's seriousness-I totally lost my calm at that point-just weird-now I've got it back and still understand everything) maybe that's why I typically play things down so often

-it's crazy how different she is now than just a month ago-so tired and lethargic, so out of it, and so uncomfortable now. 

-please, no more poking, no more prodding, no more messing with her. Just fix it. Ugh-I know they can't fix it without poking and prodding and messing with her. I joke and say that in my world I would change a few things about the body-1. The uterus will be placed below the bladder, not on top of it, 2. Skin will be clear so you never have to guess where a vein is to poke, and 3. There will be a better way to draw blood that's not so painful-maybe you just push your belly button and some will dispense out your nose-wow-would that suck or what?! Haha In all reality though, there is no better way to have created the body than it is-the man upstairs really knows what he is doing! Sometimes we gotta deal with needle pokes and prodding to get results and answers and that can be tough for everyone involved-but it's necessary and the only (and best) way. 

Now that really is all I have for you-for today. We will be here in the hospital at least a week and a half-there will probably be a lot more in the future. Keep coming back!

**(( - text added on 10-12-13 from 8:15pm-8:30pm while editing and clarifying. (I didn't edit everything, just things I wanted to add to/clarify-so I apologize for the typos, my thumbs were running 100 miles per minute and there was a lot going on-just adds to the authenticity of it all, right?)

This isn't our AbiNormal-but we will get her back! 

Update

      After calling the neurologist and explaining that Abigail's seizures aren't getting any better he said that maybe Trileptal isn't the medicine that's going to work for her after all. He mentioned a new medicine-Zonagran-it's similar to Topamax in the way it works so chances are it would do something for her, but the risk of metabolic acidosis, or renal tube acidosis, or RTA is also associated with this medicine..it's apparently not as high as Topamax, but it's there, and that worried me a little bit. It's pretty evident that the Topamax was an effective drug since coming off of that is the start of her seizure activity increase..and of course the thought of putting her back on Topamax has crossed my mind, but the RTA she got is a serious side effect! It was effecting so much of her growth that it just doesn't seem worth it! Since coming off of the Topamax she has not had anymore of those nasty blue spells, her nystagmus, or "jumpy eyes" are gone, and most importantly she has gained a ton of weight! She's got big baby thunder thighs now and a big round belly that I just love to see! But on the Topamax she wasn't having seizures and she was progressing really well - which as I mentioned yesterday has been lost since the seizure increase - she's lost a lot of what she used to be able to do..although, I truly believe that is solely due to the amount of seizures she's having each day - I really feel like as soon as we get them under control again she will be able to bounce right back (I hope anyway).
     I don't know much more than that yet, just that the neurologist is giving up on the Trileptal and wanting to try something else. We have only spoken to each other through voicemail right now but hopefully I can catch him/he can catch me tomorrow and we can get things squared away. I did mention to him that medicine I learned about yesterday-Potiga- to see what he knows/thinks about it. I think if she is going to bounce back from this then the sooner we get these seizures under control the better chance she has! It feels like an eternity right now, but I know that in the future when I look back on this month I'll think "she ONLY had them for about a month, then we got things squared away" but right now it has been one long month.

Thanks again guys! Any advice you may have or people you may know that used medicine that worked for them please let me know! I hate that we have had such good luck in finding cocktails that work for us, but then she gets a side effect that makes us take them away..It's just another AbiNormality, I guess, getting the side effects that are there, but not super common.  It just means there is something better out there for her...and we will find it!

This is AbiNormal

UGH. So many seizures!

It's true - her seizure count in continuing to increase. But let's back track to past events I never got around to telling you about.

Recap - On august 19th we started weaning Abigail off of her Topamax and the very next day she had a seizure in the lab while getting blood drawn. She had 2 more seizures the following 2 days but then none again until labor day (I'm pretty sure-there may have been one or two in there somewhere). Either way, the seizures were staying at one a day and were not very consistent at all so we just continued weaning with no addition of any new medicine until we were sure what she was going to do once she was off of the Topamax completely. We gave her the last dose of Topamax on September 10th and starting September 11th she started having 2 seizures a day consistently - one in the morning and one in the evening. I gave this information to Abigail's neurologist and we started her on the new medicine "Trileptal" I have heard good reviews about this medicine working with little side effects (which side effects were the reason we had to take Abigail off of the Topamax in the first place). We started her with a very 'baby' dose on 9/20/13 but by this time her seizure count had increased to about 8-12 per day. The seizures had become much less severe in length. When she was only having 1 or 2 a day, they were lasting approx 4-5 minutes, now they are about 15-30 seconds..but they seem to wear her out the same amount as the longer ones. Also, there is absolutely no rhyme or reason to when she will go into these seizures. Some will start when she is crying inconsolably, others will start while she is completely calm. I have seen some start even when we are playing with her and one during the middle of a feeding..there is absolutely no telling when the seizure will occur. Since we've started her on her new medicine we have already increased the dose once but there is still no sign of the seizures slowing down...in fact they have become more frequent.
     I didn't do an exact count but Abigail had at least 25 seizures today (10/6/2013), if not more, and that was starting at 8:30 this morning - she had been having them at least every half hour throughout the whole night as well, and I didn't add those into my total for the day. Last night and today the length started to increase as well, then after her night time dose they started to get shorter again. There was a misunderstanding by her father last night as I left for a ThirtyOne bag party that I was hosting I told him she would be hungry when she woke up and would need her medicine around 7:30 pm and I had pulled-up all the medicine that she would need and sat it on top of the formula tin. I got home at around 8:30 and she was almost asleep in her chair with an empty bottle sitting nearby (she had just had another seizure, and that's why she was so sleepy). I wondered if he gave her her medicine but when he didn't say anything to me when I told Olivia (Abigail's sister) that she had already gotten her meds for the night, I figured he did and everything was fine and dandy. It wasn't until this morning when I went to pull up her morning doses that I saw the medicine still sitting in the syringes! I can't believe he didn't give her her medicine! I'm positive that is why the number increased so excessively and why they were becoming longer! Seizure medicines aren't something you can just skip a dose and it has no effect - actually it is just the opposite! If you were to cut seizure medicines "cold turkey" it will make the seizures worse and more damaging. He explained his line of thinking that "I don't usually give her her medicine until after Olivia goes to bed so surely he wasn't supposed to give it then" - but that's not even true because Liv is always there helping me give Abigail her medicine. Some nights she doesn't get it until later - but most of the time its between 7:30 and 8:30. I just wish I had double checked if her medicine had been given-but I honestly did not want him thinking I didn't trust him or didn't think he was capable of doing what I asked - so when I didn't see the syringes on top of the formula tin, and he didn't say anything about not giving her her medicine I let it go. Last time I trust him to give her meds! Or at least do it without checking to be sure she got them. I just feel so guilty. The dose wasn't working anyway- but you still can't just skip it!                
           Tomorrow I will call the neurologist and let him know she missed a dose but she wasn't responding to it before that and I was going to call about increasing the dose yet again. The last time I talked to him he increased to dose of 2 medicines and said that if we didn't see any change with that then we would start being more aggressive with the increase in the new trileptal medicine. I have learned though that Trileptal is one of those medicines that the body builds up a tolerance to and we will need to continue to increase the dose the longer she is on it..ugh - I didn't love hearing that. There is another medicine that I learned about today called Potiga that I want to ask about. I just hope it starts to work soon because these seizures are killing all the progress we've made the last few months. She doesn't smile or coo anymore at all. No more stories. She has no desire to even pretend to try to hold her head up and she's just so lethargic all the time. She hasn't cried at all because she's just too tired! She doesn't suck on her hands or anything like that anymore. Not following anything - she's either laying there completely zoned out or asleep because she just had a seizure. She still smirks after some of her seizures as I think they are kind of like a release for her and afterwards it feels better. She is continuing to grow and gain weight too, so that's good. I just really hope and pray that once these seizures get under control again she will pick right back up from where we left off.  She is still responding to touch and sound for the most part so I know she's not completely gone- just too dang exhausted to do anything else! Sometimes I can't even tell if she's really awake or asleep - her eyes are open, but all other signs point to sleeping. I hate it actually. Before I was tolerating it, but now I'm really done with it. I just want my baby back.

     Here's a story that doesn't have much to do with what I was talking about before, but something I've been meaning to write about for a long time. So back in September, on the 18th, I went for a visit to Dr. Larsen just to give him a heads up of what's been happening with her and the medicine change (this was before we started the trileptal but were about to). He decided that it would be best to take a blood test to run her numbers and see where she was in case there was something off due to the change in medicine-just to make sure we are back at baseline. Abigail and I went over to the lab and got the lab work done - but it wasn't without trial. The phlebotomist tried to take the blood from Abigail's arm, but Abi has become a very hard stick - so instead of sticking her again and making her really mad the lab phlebotomist decided to take blood from the heel. I asked if this was going to give them a hemolyzed sample since every time we did it in Vegas it skewed the results and they had to come back and poke her again anyway, the tech assured me that if the blood was flowing well then the chances of that happening were decreased. In her defense, she tried everything she could to avoid a hemolyzed sample - she stuck a heat pack on her heel it so would get the blood flowing and held her heel in a way that would pool the blood to the area she wanted to poke so it would just come out. It seemed to flow pretty quickly and the tech wasn't concerned so Abigail and I left for home. We got home around 7:30pm and by 8 o'clock had received a call from her doctor that the results of the lab were troubling and he wanted to go get them again. Apparently her potassium levels were really really high and her bicarbonate levels were still low. He wanted me to GO BACK to St. George (2 hour drive) so we could redo the test through a venous sample because the sample we got from the heel was probably the reason for the skewed numbers-but he juts wanted to be sure. Apparently that high of potassium levels in her body could stop her heart-no one wants that. So Abigail and I traveled back to St. George to get the proper test. I told the phlebotomist that would happen if it went from the heel and it did..now I know to put my foot down and say "no, it MUST come from her vein and if you can't do it send me a neonatal specialist that can". So [almost] needless to say, Abigail and I stayed in St. George for the night as we didn't even get out of the hospital (we ended up going into the E.R. because the pediatric floor in the hospital only had one nurse on staff) until a little after midnight. That is the first morning that Abigail woke herself up with a seizure..just a side observation.

     We went to Disneyland in California over the weekend of the 20th - 22nd. Abigail did pretty good for the most part. She was still having quite a few seizures so she slept a lot which is bittersweet. One day though she didn't want anything to do with that day. She was NOT having a good day so I took her back to the hotel room..she screamed for a good 2 hours before she finally had a seizure and went to sleep. Poor girl! I don't know what was bothering her so badly but I didn't like it one bit. Other than that day she really did do really good.

     We've started her on a new formula as well - we went back up to enfamil/enfagrow gentlease (we use them interchangeably-she seems to tolerate the enfagrow more, bu that could just have been a fluke observation) we have to give her miralax every night/day as she is super constipated with the iron supplement we give her, and when she gets the miralax she seems to be okay- but I can't help but wonder if the formula change isn't part of the whole problem over all. If maybe she is having tummy troubles more than I realize which is part of the cause of some of her seizures. I figure we should get the seizures under control and see how she bounces back before I worry about that. We made this formula change back closer to when we were just taking her off the topamax so the chances this has something to do with it is slim, I just want to find a cause or a reason so badly to stop it all. Figure out what's causing all this grief so I can cut it off at the source!

     So right now we are just in the middle of the waiting game..but it's been almost a month since her seizures have started acting up again and I'm very ready to get things back to where they were before. I'm so mad the topamax had such a bad side effect because everything was working so well and she was progressing - she just wasn't growing. BUT! some things I have noticed that could be okay is that her vertigo spells-I'm pretty sure I told you about those things she did when she was on her back where she would look incredibly scared and scream bloody murder until you pulled her arms back into her side? It looked a lot like startle reflex, but much more severe and would last sometimes as long as you would allow it before you pulled her back into safety. The longest I ever let her go was 30 seconds for the sake of a video to show her neurologist. He said they were most likely not seizures because they were situational (only happened when she was on her back) and him and her pediatrician agreed it was most likely vertigo caused by coming off of the Topamax. Anyway, she hasn't had a vertigo spell in a long time, she hasn't had a blue, or breath holding spell since I can remember, and her nystagmus seems to be less severe overall - haven't seen that in a while either! I don't know if any or all of these things were side effects to the topamax (signs point to yes), or maybe the RTA (renal tube acidosis) that the topamax was giving her (the lack of growth definitely was from her RTA) or if her seizure activity increase is just keeping her too tired to do any of that - but like I said, most evidence points to side effects from the topamax...So it was definitely a good thing to take her off of it, but I just want this other one to start kicking in RIGHT NOW!

     One last thing then I'll let you go, for real. My sister found this wonderful organization called Jack's Army found at jacksarmy.org. It is a family who's son has the same condition Abigail has, but he is now 3 or 4 and they have a foundation - the Jack Pribaz Foundation - that supports research to find a cure for this anomaly of a disorder..It also has a lot of really good information about the KCNQ2 mutation and Jack's story of his battle with diagnosis this disorder. Its a great site and I urge you to go take a look at it..if nothing more than to just learn a little bit more.

     Thanks for reading guys-I'm truly sorry I have been so lacking in keeping up with 'the happs' of Abigail. I hope I have more good news to share with you next time! For now we will just be taking it all one day at a time - the good with the bad! Overall, things are good on our end - just a few hiccups to work through, but we will!

This is AbiNormal.