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!