..AND we're back

     Well, it's been an exciting couple of days for us over here. We are back on the Vimpat after a week and a day of being off of it. On Thursday, September 11, Abigail started having seizures again! Literally one day after I posted about how well she was doing! She had her first seizure around 10:45am and it lasted about 2.5 minutes. From there they got progressively longer and closer together. She has also not eaten anything since 9 o'clock that morning and what she did eat then she puked up. Abi ended up having 8 seizures by 9 o'clock that night and they were getting close to occurring every 30 minutes with each seizure lasting right at 5 minutes, so I brought her into the emergency room for some help and relief. I was going to go to primary children's (you know, with it being so close and all) but it was late, and decided that since Riverton was a primary children's satellite site that it would be fine.  They put her on fluids to rehydrate her and gave her a dose of Ativan (which is a quick acting stop seizure medicine). After getting a hold of her neuro team at Primary Children's they decided to increase her keppra dose to see if that would help and gave her a bolus (extra large dose) to jumpstart that increase. It all seemed to work for a little while as she was able to sleep soundly with no seizures for about 6 hours. We left the ER at 2am. By 6:30am the next morning, however, she was at it again. She had 2 seizures before I left for school at 8 am and had had 8 seizures by 11am. It was then that I decided we needed to go back into the ER - but this time I took her into primary children's. By the time that I got her to primary's she had had 2 more - taking Friday's seizure count to a grand total of 12 by 1pm. Primary's did a lot of the same that Riverton did, except faster.
      *Luckily* Abigail was having a seizure at the exact moment that I walked through the ER doors, which put me first on the triage list - So I walked in the doors and immediately back to the room. By the time I got in the room she had 8 nurses and the doctor there either administering the Ativan, taking her vitals, putting in an IV, or talking with me about her condition and seizure history. I actually took a picture after a minute or two - once everyone kind of settled into their role with Abi - because I thought it was kind of neat. I explained to the Doctor that we were just in the ER last night and told her what they tried which obviously did not work (not the ER docs fault - it was the plan, I agreed to it, it just didn't work like we all had hoped). And then proceeded to tell the Doctor what I would like to see happen. She said that she had to make a call to the neuro team, but my plan sounded doable. My plan was, after talking to her neurologist, to get her back on Vimpat, because at this point it seemed pretty likely that it was actually doing something for her. But instead of doing it the slower way he suggested (of just putting her back on at an increased dose at home) I wanted to do it via a bolus at the hospital to get her to a therapeutic level faster. She continued to have a few seizures in the ER (I believe 3 or 4) but they did slow down a bit. Finally, we felt she was awake enough to give her medication orally - we had to wait and give it to her orally because they don't make vimpat as an intravenous solution due to the fact that they don't usually use that as a rescue med...or ever use that as a rescue intravenous med. I don't remember exactly what time we gave her her bolus of Vimpat but she hasn't seized since 3 o'clock yesterday (9/12/14).
      We got out of the ER yesterday about 5 after 6pm. When we got home that night I wanted her to eat since she still hadn't eaten anything since thursday morning at 9am (she was on liquids and electrolytes at the hospital so she was fine nutritionally, but her belly was empty). I decided where she was still very lethargic it was probably better she get some baby food because she could have more control over that as it's a bit thicker than her pedisure. She ended up eating half of the jar from the spoon! She was still very sleepy so I was very happy with half!
      She has been extremely tired today - can you really blame her?? She only ever woke up to eat, which is a huge improvement in itself! Each feeding she took a whole 9 oz bottle, and she took it so quickly! She was not messing around - I was shocked at how quickly she each bottle. At lunch I gave her some more baby food after her 8-9oz bottle and she took another 1/4 of the food before she decided she was done. She slept until about 10am when she at one bottle, then again until about 2pm when she ate another one and some baby food. Then fell back asleep until about 7pm when she ate yet another whole bottle. From 7pm to now(11pm) she was actually pretty bight eyed and bushy tailed - relatively. We were able to get some little smiles out of her, and I even heard an ever so slight coo! It seems as if (hopeful thinking) that we were able to get the seizures under control quickly enough that we didn't loose too much of Abi's already limited abilities with this go around. We went out to watch her Dad do the Tough Mudder today and she slept through the WHOLE thing! Through the heat and the stroller off-roading bumpy ride and everything. I was cool with it, and apparently so was she. I'm just glad the heat didn't make her miserable.
     Now, I may sound crazy for wanting to continue to try to pull back and pull off of meds, but it would stand to reason that since the seizures continued while on the keppra and not vimpat, and didn't stop when they increased her dose of Keppra, that the Keppra is actually not doing much for her. After a month or so of letting Abigail recover from this bout I would like to still look into chipping away at the keppra and see what happens. However, this time I won't try to be so aggressive and skip ANY step downs so that I know for sure that the dose we are at is or is not effective.
    SO - We're back on the Vimpat, and i'm okay with that. We are back on Vimpat at a slightly higher dose than we were when we stopped, just to make sure to get her back to therapeutic levels a little more quickly. Again, in about a month or so we may try to go back down to the dose she was at previously (we were at 1.5mL (15mg) before coming off - now we are at 2mL (20mg) - at 10mg/kg that is only a difference of 5mg - so very slight increase).
So far the vimpat is seeming to work already, which is really great. I was SO worried that we weren't going to be able to stop the seizures as easily. *Usually* breakthrough seizures like Abigail was having (seizures that show up after a time of not having them) are much harder to stop than 'original' seizures.
   We still do want to try the oil, and I still may put it off until we get her meds figured out and to a level that I feel is okay and necessary. I just hate the idea of having her on a higher dose of meds than she actually needs. I know I should probably be more "if it a'int broke don't fix it" kinda of thing, but I'm not, and I probably won't ever be with Abi - when it comes to her meds anyway. I will always try to get her off of them if I feel they aren't necessary...of course I would never do it without the consent or second opinion from her doctor - but I will fight for what I think is best for Abi, and being on low or no medicine, if possible, is always best. Right now it's not possible, so we are back on - but in due time we will try again.
  So Abi had a little hiccup the past two days, but seems to be back on the road to recovery! She actually just started fussing a little bit, so I'm going to go try and feed her one more time and see if that's it. I love to hear her fussing because it shows me that she is awake/alert enough to know what she wants and to be able to share it with the world. It's funny how, after being with a baby who literally can't do anything - physically or vocally or anything - you begin to appreciate the crying. It lets you know they are back, they are breathing, and aware..and that's a nice feeling.

This is AbiNormal - Thanks for listening!

This was actually taken in the ER at tiverton - towards the end of the night. After the Ativan had kicked in and she had a bit of relief from the seizures. Such a sweet sight. (taken 1:30am September 12 2014)

Within 1 minute of walking into the ER this is what our room looked like. Primary Children's is phenomenal. What a blessing to be so close. Just FYI - the third nurse back with his face covered is indeed a guy - IDK why I decided to share that, just cuz they all look like ladies and they weren't. Also, not pictured in this picture is the nurse who was getting a history from me. She was to my right. (taken 1:30pm September 12 2014) 

This is Abigail today, so SO sleepy. Like I said she slept most of the day, but still woke up to eat. And we could get her to respond a little bit when she was awake. (photo taken around 4pm September 13 2014).

..AND we're off!

     We have officially taken Abigail off of Vimpat! It has been one week today since her last dose. She is now only on 2 anti-epileptic drugs! Potiga and Keppra. I've mentioned my desire to start chipping away at Keppra after a while of letting her body completely dispose of all the extra Vimpat and the doc agreed that after a month or so of no Vimpat then we can look at coming down on the Keppra too..but we cannot not mess with medicine if we get on the CBD/Hemp oils..so that would mean that we would have to wait to put her on the oil, but I would rather wait and get her off of all pharmaceuticals before trying the oil anyway! Especially since we aren't seeing any seizures right now anyway the oil isn't as much of a priority as it was. Now the priority is taking her off all the meds that we can. Also, we got her another EEG and there was indeed much improvement since her last one in October. The doctor said that it was at least readable. He also mentioned that it was just a bit off from a 'normal' EEG read - I don't remember exact numbers but it was something close to a 'normal' read for a 'normal' person is about 6-7 and hers is 4-5...I also don't remember what it is measured in, but none of that really matters! I just think that's pretty neat! It appears that she is outgrowing, if not already outgrown, the seizures. It seemed to have just happened over night! I still do want to try the oils though as I hope it will help with cognitive gains, but we won't know unless we try it. If we get on it and we don't see any improvements (we'll give it 3-4 months or so) then we will deme it unnecessary and just let her body figure it out.
     Since the seizures have stopped - about 2 months ago now - we have seen her be quite a bit more alert in the sense of her surroundings. She will lock on to you now for a second or two and will really respond with a seemingly intentional smile! She will 'coo' back to you as if in a conversation - although she likes to coo often. She has become very vocal. She is really a happy little lady for the most part. Falling asleep and waking up are still chores for her at times, but she survives that. Once she falls asleep she sleeps really well. Her head control has also improved ever so slightly. She is still very floppy with it, and gets lazy to where she doesn't want to hold it up, but will actually look to where sound is coming from or if something catches her eye. Her gaze has become seemingly more purposeful. It's not a 'normal' focus still, like Max's, but it is a focus none the less.
   Speaking of Max - that kid is insane. He's already trying to crawl. He can spin 360 in a circle on his belly and can roll belly to back and belly again like it's nothing. He's even figured out scooting. I've only ever had Abigail so I don't know if he's early, or late, or right on track, but it doesn't matter - it's very fun to watch him learn and laugh. He just turned 5 months old BTW. You can see Abigail learning too. Like, I said she is very happy most of the time and just so sweet and talkative. I very much believe she knows when someone is there and smiles at their presence. She'll catch a focused gaze on some things and hold it for longer than in the past. Max has even gotten her attention once or twice. I love that! I love when Max plays with her. Right now Max loves to play with his feet - but he's not closed to the idea of playing with any other feet that are within his reach. He'll grab onto and chew on Abi's feet too. haha At least she doesn't walk around yet to get her feet dirty! I love to watch Max progress and learn and get so strong and funny, but I also do not at all feel like I've missed out on ANYTHING with Abigail. If anything I've gotten more from her and her condition than if she didn't have it.
  Abi still has some AbiNormal quirks about her - such as there is no 'bed time', 'nap-time' or 'wake-up-time' with her. She is very much on her own schedule. Some times she'll take naps, other times she won't. Some nights she'll be asleep by 9 or 10 - other nights she stays up until 2 or 3. She doesn't 'usually' stay up that late screaming - but she'll just be in the front room cooing away until she gets tired - then she'll start screaming until she can fall asleep. She's still pretty constipated. We try to feed her prunes every other day to combat that. Sometimes it works, sometimes it doesn't. We've done a few doses of Miralax here and there, but i'm worried about tummy troubles again so I haven't done it that often. (if you remember back in october we discovered the Miralax doses we were giving her every day started giving her tummy troubles and were a big source of her arching pain).
    Oh yeah! Also, she's still teething. She has like 4 teeth coming in at the same time. You can now see the whites through the gums and the gums are starting to look a little swollen. She is taking it like a champ though! She's still so smiley and happy pretty much the whole day. I also can't say for sure that her fits are due to teething pain all the time.
    We've also started back up with Early Intervention. We have Occupational Therapy coming 2x per month, Physical Therapy 1 time per month as of right now, and a vision specialist 2x/ month. I have asked about music therapy which is a possibility, and just recently thought to ask about speech therapy and ask when they want to start that. Things are looking good for therapy. And lastly, we've gotten a referral to Shriner's Orthopedic Hospital in Salt Lake - they specialize in mobility issues (which Abigail has) So they would be able to get us into a stander/walker/wheelchair/braces (for all the needed areas of her body - not just her ankles). Good things happening over on this end! The KCNQ2 Summit in Denver is one week from today, i'm way excited about that! 2 days of sharing medical and non-medical information about our little ones with other parents whose children struggle with the same disorder. It will be so fun! And hopefully informative too! Abi will get to meet Dr. Cooper, who is the head honcho in charge of all the the research that goes into Abigail's KCNQ2 gene mutation, along with several other team members from all over the world working on this research too. Abigail is actually on a study now that they are doing trying to figure things out like why some kids are more severely inhibited than others, Why some kids grow out of their seizures sooner/later,  etc.

The last few months have been really good months for Abigail and family! Thanks for all of your prayers! Keep em coming!

Thanks for stopping by!

This is AbiNormal
 

This is Max when he plays with Abigail's feet..I tried to get one of him actually eating her feet, but he stopped before I could snap one. Then he started getting angry.