..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.