2 months later

     It's been two months since going back on the Vimpat (can you believe that? It does NOT feel like it's been that long!) She has not had any seizures at all since going back on the Vimpat - so I guess it's safe to say that medicine is definitely helping. I'm still interested in coming off of the Keppra since that didn't seem to help her seizures at all when she had some back in September - but we can't come off right now and I'll get why that is a bit later.
    Since the last post Abigail has been to Florida (DisneyWorld), New Jersey, and back home. There's been quite a few exciting advancements we've made in potentially furthering her care. First off, we got Abigail in for a visit at Shriners Hospital for Children up in Salt Lake. That's where a lot of this good stuff got started. All thanks to our Occupational Therapist from Early Intervention for getting us the referral. (I've since learned that she used to work at Shriners and is beloved and praised by all that I mentioned her name to).
      On Wednesday of this last week, Early Intervention came through with a cool new stander that we can put Abigail in. She has had standers in the past but they have been "supine standers' where she stands up with the support being on her belly side - but she couldn't ever keep her head up in those very well..she would always throw it backwards making it harder for her to breath. She hated those standers - from the moment you put her in them she would fuss to no end until the moment you took her out she would be just fine. This time we have a "prone stander" where the support is against her back instead giving her head a place to stop when she throws it backwards - and it can't fall back either. So far she has been in this stander 3 times and she doesn't fuss until she's done standing! I guess Taylor put her in it the other day and Abi fell asleep in it! That's funny! Needless to say, she doesn't mind this one as much as the supine standers so we are on the right track with this one!
     Yesterday we got Abigail fitted for a wheelchair at Shriners. A little while back we were able to get Abgail in to see the PT and OT at Shriners and got her some hand splints to help with her thumb strength and ankle braces that are fitted right to her feet which is all so cool and exciting but, I cannot tell you how excited I am to get Abigail in a chair. After seeing what she looked like in one yesterday I am so very pleased and March cannot come soon enough. (That is about how long the whole process takes from getting the approval through insurance to getting the wheelchair built and all that.) She was sitting up so straight and strong in the chair in the office, she looked like such a big girl! It gives her support in all the right places but makes her work just enough to keep her head steady. She sat in the measuring chair (a chair that simulates a wheelchair but has measurements on it so they know what size to build her wheelchair) for about 30 minutes with no fuss, and she could have gone longer! It just looks so right and she seemed so comfortable. The chairs we have here at the house (the feeder seats and all that) are so nice to have around so that she isn't always laying down, but they are just lounge chairs for her, they don't make her work and she can't sit straight up and down in them or she will tip over...I'm just ecstatic to have it all. We placed an order for iris model of the chair in candy purple. I think it will be so fun! And then today we got a call saying that her ankle braces are ready so we set up an appointment to get those final measures and fitted correctly!
    We also got Abigail paired with a runner from the group " I run 4 Michael". It's the coolest little program where a special needs person gets paired with an able-bodied person who dedicates their runs and races to that SN person. It raises awareness for the disorder, helps connect people, and gives the other person a reason, a purpose, and motivation to run. We got paired with Ms. Amanda from South Carolina. She seems like a doll and has already put in some miles in honor of Abigail. It seems like a win-win! I'm even thinking about becoming a runner for someone else's Special Needs. You should check out the group on Facebook, it's really a neat program ... Margo - you should sign up to be a runner too! I bet Owen could do it too! How fun would that be?
     But of those all those extremely neat things, here is the absolute neatest. The reason we can't come off of the Keppra yet is because Abigail is going to get in on a medicine study at the University of Utah. If you remember, back in September Abigail and I had a weekend we will never forget in Colorado. We were able to meet and mingle with other families who children have the same disorder as Abi, along with the specialists working on their case. Abi and I made so many great friends that weekend and learned much more than I imagined I could about her disorder. Families and doctors weren't the only ones that were there though. There is a company from Europe called GW pharmaceuticals..they sent some reps over to be at this conference as well...but not really just any reps - the HEAD guy over the company and the chair for the drug Epidiolex (epi - 'dye-ohl - ex) was there with 2 other reps. -- Just So you understand - Epidiolex is a pharmaceutical version of Cannabis oils that all seizure families are trying to get their hands on. It's the exact same thing as the cannabis oil from Colorado with the exception that this company was able to get ALL of the THC out of the extract so it is 100% cannabis. This 0% THC was able to get FDA approved to study in America. ((Some people/research says there is a synergistic effect between the CBD and THC that has to be there in order for it to work most effectively. The guys at GW say this is only a claim made because they haven't figured out how to get the THC completely out.)) - neat fact - the guy explained to me how he got the name for the drug and the "epi" comes from 'Epilepsy' - the "diol" comes from cannabiDIOL - and the "ex" comes extract - it's an extract from Cannibidiol for epilepsy -- sounds fancy, but that name is exactly what the drug is! How perfect!
     Well,  I got to talking to these guys without really realizing who they were but soon found out that one of the reps is from California and knows Abigail's neurologist by name. She was excited to find out that Dr. Sweney was our Neuro in Utah. They then told me there is an Epidiolex study going on at the University of Utah - Dr. Sweney had told me before they were trying to get some sort of study on the oils out here but that is all I had heard from him...and that all the spaces were full for the study. Well, about 3 weeks after the KCNQ2 Summit in Denver I got an email from Doctor Sweney saying "The guys at GW pharmaceuticals want Abigail to get in the study here - are you interested?" They asked for Abigail BY NAME to get in on this exclusive, already full study being done right up the street on the exact extract we've wanted to try....OF COURSE WE ARE INTERESTED! Right now they are working on amending protocol with the board to get Abi added to the study..they are amending protocol JUST FOR ABIGAIL! How cool is that! Part of the study rules is you have to have had no medicine changes within 4 weeks of starting the study - which makes it impossible to start changing the Keppra now - It would take too long to get her off of it then we'd have to wait another month to start in on the study..so we just wait and keep her on the Keppra a bit longer. Our doc says that doesn't mean that we can't come off once we start the oils if we see good enough results - so I'll just keep my fingers crossed for that.
     About a week after I found out about this whole study prospect thing I got an email from Realm of Caring (the company in Colorado in charge of Charlotte's Web) stating that they have to push back their shipments of the oils due to - who knows what really - but there's some sort of something holding them back and they are working on the kinks and will keep us posted...How lucky is that? I get in on a closer, cheaper, more black and white legal study only to find out the other oil isn't available anyway. Like I said, right now we are waiting on a protocol change so we are still NOT on any oils yet - we do have the 'red' permission card to have and administer the oil, but we are not on it yet. We are still waiting - but I'll let you guys know AS SOON as we do!

We've got some really good things happening over here at the AbiNormal household: Still seizure free, we've got a new running buddy, new ankle braces, new hand splints (to help thumb strength for gripping), wheelchair coming soon, a stander, a  CBD oil extract study...lots of good things.

Abi's head strength seems to be on the up right now.  She just got over a week long sickness that kept her pretty raggedy and hot and uncomfortable. She seems to be feeling much better now though and seems to be getting back to her happy, chatty, sweet, little self.  She has, though, started those pesky breath holding spell things again when she get really angry or tired. They are starting to seem more "seizurey" but I still don't count them as seizures. They aren't happening as often as they were when she was having them before, but they do seem to be more intense at times - like, before she would hold her breathe 4 or 5 times in a row but now it's just one big one and then she's calmed. We haven't changed anything in her meds for 2 months now so it couldn't be that. During her sickness she did stop taking Pediasure and would only eat from the spoon - I guess that's good and bad - I do worry about her getting enough calories, but I guess if she isn't withering away and not complaining about hunger pangs then it can't be that bad, right? I don't know why she stopped taking the bottle, but I initially think it had to do with not being able to breath through her nose to eat. She is still slightly stuffy so that still may be the case why she still won't take Pediasure. We are also speculating that her throat might still be a little sore or something, but where she can't tell us it is just that, speculating. Like I said, as long as she is still eating and doesn't loose too much weight or seem to be starving then we'll just let her do her.

Who knew so much could happen in just 2 months? Max is 7 months old now and has started to crawl - like hand and knees, off his belly crawling. He's been scooting for quite some time. He's been pulling himself up on everything and anything he can pull himself up on to for a little while now, but now he's able to move around better while he's up - he's not just stuck standing in one place. He babbles and giggles and squeals and I love every second of it. He LOVES to eat - anything you put in front of him he will devour - we have found only 2 things he doesn't seem to enjoy very much - The 1st is mixed berry flavored yogurt melts - he love the strawberry ones though. And the 2nd is cheese puffs - not the cheetos kind, but the chester kind - or something. He doesn't like the cheese flavored, but he LOVES the butter flavored. Tonight I gave him some bananas and he went to town on those too. He eats from the spoon like a pro and even grabs the spoon like he wants to feed himself. Although he's pretty much almost mastered getting whatever is in his hand to get in his mouth, he's not as good with the spoon - he still tries to feed his nose or eyeballs at times. He's one of the funniest kids to watch - he is so mobile and so interested and so extremely expressive.
     He's really good with Abigail too. Sure, there are times he pulls her hair or slaps her in the face, but obviously it's not intentional or malicious in anyway. He seems to really know she's there and be drawn to her. Abi definitely reacts to him crawling all over her, but doesn't seem to mind too much. I love that she's getting that extra stimulation from a 'peer' if you can call it that.

I'm head over heels for both of my little babies - and am excited about both of their futures. Abi has some really cool things coming with potential progression, and well, next for Max is walking! Here's to growing up.

Thanks for Stopping By!
This is AbiNormal


Pictures to come soon!

..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. 

So, it's been a while...

     It's been over a month since my last post and I am very sorry about that! Here's the happenings: Since my last post in NJ we have made it back to Utah in our new house in Saratoga Springs, Her dad and I have started our new jobs at our new schools, Abi and Max got a new nanny, and we decreased one of her medicines by 50%! Things have been going very well.  She's also not had any seizures since we've returned from NJ, even with the decrease in meds! (The fact that she hasn't had any seizures is why we started the decrease)

     Yeap, we bought a house in Saratoga Springs Utah right down the road from Jaren's brother and sister and their families. We love the location. Abi gets to share a room with her little brother, Max, and it seems to work out just fine most nights. Abi's demeanor has changed to be the most pleasant little lady. She smiles a lot and seems to be very aware of what is going on around her, although she still cannot show us physically. She smiles when she gets attention and can even watch someone cross the room at times! Of course there are times where she still throws her fits and holds her breath, but most of the day she is pure joy. The breath holding things she does, as I just mentioned, are still around and sometimes just as severe, but don't seem to be anymore frequent. The still do tend to happen most around times when she is extremely sleepy or hungry. The hungry one we can combat most of the time by keeping up on her feedings, but the sleep one...well, she's on her own for that. We can try everything but if she's too worked up to sleep she just won't. So on those nights we will put Max to bed and let Abi fall asleep in the front room before we bring her to bed so we don't wake up her brother and have 2 angry babies. But overall, she is just as happy as can be. She coos all the time too. Like right now she is just hanging out in the front room talking to herself. I love it.

     With the move to Saratoga Springs came new jobs - or really the new jobs elicited the move to Saratoga..but same thing. Jaren now teaches CTE (Career Technical Education) - Computer Tech to 9th Graders and I teach PE 1st-9th Grade and 7th Grade Health. So far so good! I'm really enjoying it.  Due to the hours that Abi's dad and I are away from the house we had to find child care. We at first found a really good day care that we would have felt very comfortable with and were about to sign up with. I was worried that with my past time management history I would have a hard time getting the kids up, dressed, drugged (with anti-seizure medicine...it's just what I say, I don't mean it derogatory) and out the door in time to make it to school in time, but I was willing to try.. About a week or 2 before I was going to call that daycare back and reserve our spots I went to a friend of mine's wedding. While there visiting with his family (whom are all also good friends) his youngest sister offered her services as a nanny! It was the best thing that could have happened! Taylor fit right in with the babes and they took to her without a second thought. She is so good with them and, like I said, they seem to really like her too. Also, it's wonderful that I don't have to worry about waking the kids up in the morning. I can just get myself ready and let them sleep. Or, if needed, she can take over the morning feeding while I'm finishing up trying to get ready to get out of the house. I sure do miss those little dweebs while i'm at school though, but the break is nice too.


     You heard me right...we've decreased her Vimpat by 50% since my last post! (the second 25% happened just this morning, so I guess I shouldn't speak too soon about still no seizures). So far this year we have made 4 decreasing steps on her medicines all together and have seen no changes in seizure activity! That is SO cool to us. We pulled back on her Vimpat by 15mg around February/March then pulled back her Keppra by 70mg in April. 2 weeks ago we pulled back her Vimpat again by 8mg and again today by another 7mg. If things continue the way they are we can be off of her Vimpat completely in one month! 4 more weeks! That would be way too cool. Then after a little while of that with no changes I would be willing to look into coming down on her Keppra too and see what happens there! Keep us in your prayers. I would love to get her off as many meds as we can before we start the CBD/Cannibas/Hemp/Charlotte's Web Oil in October.
     OH YEAH! I forgot to mention that in the beginning! You know my Neurologist who was against the oil a few months ago? Although his opinions have not changed immensely about the oils, his leniency towards it has. He has submitted our paperwork to the health department to get our Red Card! I called them last week and have a meeting with them this upcoming Wednesday to go get it! I'm so excited! We are all set to be in a good place to get off the wait list come this October with the next harvest. We are number 1,190 on the wait list (I know, crazy right?) But they have a goal set to get 3,000 people off of the wait list with this next harvest. Even if they only get half of that number we are still up there! But, like I said I want to get off or at least decrease any med before then because our doc has made it very clear that once that gets started he does not want us making any changes with her meds until we can get a really good clear idea of what effect the oil will have on her, if any. Obviously we would love to see even half of the results we've seen other kids have with this oil, but we also realize every child is different and so we are cautiously optimistic about it. I don't expect it to be our silver bullet, but that sure would be nice!

Even though her seizures have decreased to non-existent, there has still not been very much physical progression. We are hoping that by coming down on the meds we will start to see some more, but who knows. We have, in the works, a routine EEG to take a look at her brain and see if there is any normalization there at all. I'm hoping that will give us a good picture of what to expect the next couple of months based on the activity that shows.

But, as you can see, things are going very very well over here, especially for Abigail. Max is doing wonderfully as well. He definitely does not have any delays..if anything he's a bit ahead of the game. He's 4 months and rolls all the way around like it's nothing. He's already working on trying to sit up by himself. He loves to stand whenever possible and has pretty good control of his hands. He loves to suck on his hands and also plays with his feet. He also right now likes to sleep on his belly. He will fall asleep much faster on his belly than his back. Actually, if you lay him down on his back he will roll to his belly then fall asleep. It's actually quite comical. This kid is too much. He's so smiley and as happy as his sister! I love to watch him learn, you can see it in his eyes. I'm very biased but I feel like his presence is just magnetic. He's already got quite a personality.
I think I said this in my last post, but his doctor told me that some mothers get discouraged when they have a normal baby after a not normal baby because we begin to see just how delayed the first one is. I can totally see how that would happen to a woman, but in my case, it doesn't discourage me. I honestly do not feel like I've missed out on anything with Abigail. I honestly believe she is sheer perfection just the way she is. Besides all of that, she still has this captivating personality that she is who she is supposed to be. Besides that, I still hold a glimpse of hope that one day she will eventually progress. I don't know how much, or when, but it will happen.

This is AbiNormal

                                                       There's almost no better feeling.

                                                  Abi and some Bum - Max and Mamma Mia

                                          Oh, Max, it's not that bad. See? Abi is Happy!

                                      That Bum is holding Abi again. Max is hiding..can you find him?

                                                          Fun at the Pool

                                       I know I am biased, but he is too cute I can't stand it!

                                               Mommy's Happy Place

                                                             How Sweet

                                                          Something interesting over there!

                                              "Watch this guys..i'm gonna get him" - Abi

                                                           "nom nom nom" - Abi
                                                           "someone help me please" - Max

                                                          "haha I got him so good!" - Abi

                                                            best buds

                                                            Love these dweebs

                                                           They like to hang out together

                                          Sleepy time, she comes.

                                              Max is such a bully! :)

"She's a blessing to him too..."

It's been a very long while since I posted last time. Not too much has happened, I just have a few little things to post about before I forget!

Currently Max, Abi, Liv, and I are in New Jersey visiting family and friends. We got here a week ago as of today (June 25th 2014). On Sunday (June 22nd) we left for Huntington West Virginia to welcome my cousin Madison home at the airport from her LDS mission in California. The kids traveled very well on the way there. Max slept most of the way and Abi just hung out and cooed most of the drive. We split the drive up by going to my sister Margo's in Morgantown WV before heading to Huntington. It's about 5 hours to my sister's house from my parent's house in NJ and then another 3 hours from my sister's house in Morgantown to Huntington. So we would drive 5 hours to Margo's, stay the night, then head out to Huntington..then visa versa on the way back.

I don't know if it was the traveling or just where she is right now in her brain, but Abi's schedule is very backwards. She stayed up until 3am that first night at Margos. But she wasn't up screaming, instead she was up happy and playing. Then she slept until 2 or 3pm the next day. It's been like that since Sunday. Monday night she was up until about 2 or 3am again, and then slept during the day. Then last night she was up playing and happy until 4am! Needless to say, she is still sleeping right now at noon. When she's awake she's very happy and calm and pretty aware/alert too..she's just awake at the wrong time of day! I'm sure eventually it will get back on schedule where it should be. I don't love it when she's on this schedule (I've seen it before) but it has worked itself out in the past so I'm not super worried about it. She also, as of yesterday, started feeling a little warm again like she's going to start having those fevers again - so that may have something to do with the upset sleep schedule.

She did have one seizure on Monday night. It's the only one we've seen since before we left Utah to come to NJ. What we've been seeing now with her seizures is about that. She will go a week without any seizures, then she will have a day or two of multiple seizures in the day. This time, however, it was just one seizure. I like that. But, like I said, she is a little warm so we'll see where that takes us.

Before we all left for NJ Abi and I were able to squeeze in some last doctor check-ups and therapy sessions. We will miss all of our care down in Southern Utah so very much. Oh, for those of you who haven't heard yet our family is moving back up north because Jaren and I both got jobs teaching in the Saratoga Springs area. Jaren will be teaching 9th grade CTE at Vista Heights Middle School in Saratoga Springs, and I will be teaching 1st-9th grade PE and 7th grade Health at North Star Academy in Bluffdale UT (which is right on the border of Saratoga Springs). We are going to miss our little Mayberry of Orderville quite a bit but are also very excited for the new start. Abi and I are going to miss her therapists and doctors and especially her pharmacist from our life down there, but are very excited for all the therapy opportunities that will be available up in Utah county of which will be much closer! I think this move will be so good on so many levels, especially with the level and accessibility of care for Abi, although we are sad to leave our Orderville friends and family. Back to her last visit with Dr. Larsen, her pediatrician, we were sitting in the office and he was giving me suggestions/referrals for pediatricians up north. He is such a very sweet, sincere, caring doctor and was trying to 'prepare' me, of sorts, for when Max grows up it will highlight how behind Abigail actually is. I assured him I am very aware as I see cousins, nephews, friends, etc whose kids are her age, or close to, and I can see the delay..He then said, and I'm not sure exactly where in the conversation it came up, or how it fit in, but I, again, was talking about how I'm sure Max will be good to have for when he gets older and blah blah blah. But Dr. Larsen said "She's a blessing for him too"...Meaning it's not just Abi whose lucky to have Max, but Max is also lucky to have Abi. It goes both ways. I don't think he meant that to be as 'profound' as it ended up being. But it was really a neat thing to hear from an unbiased party.

Also before we left for NJ Abi, Max, My dad, and I were able to go up to the "Get Seizure Smart" conference held by the Epilepsy Association of Utah (EAU). It was a phenomenal conference with a lot of information presented. The main reason I went was to learn more about the Cannabis oil and how it will work in Utah, how I can get it, and what I need to do to get it all in to place. I learned a whole lot of information about it at this conference including that they are going to try to get 3,000 patients off of the waitlist with their next harvest in October. The reason it takes so long is that the plants need to be cloned - not just grown. The Realm of Caring ,which is the group that has charlotte's web (the type of oil we would need), just recently got a new lab that will allow them to clone a lot more at a time. The plants are able to harvest in March and October of each year..In order to qualify for the oil, based on Utah laws, the child must have 'intractable epilepsy' meaning they have tried and resisted at least 2 treatments (Abi is now currently on her 5th or 6th 'cocktail' of treatment - which is minimal for many children with resistant epilepsy like Abigail has. I know families who have tried 18+ medications and still have seen no results). We have to get a letter from a certified neurologist stating that this child has tried 2 or more treatments with resistance and could benefit from trying hemp oils. Right now I've got a  neurologist that is anti cannabis oil, but has told me he would write the letter with caution. I want to switch neurologists for a few reasons, but the main one is that I feel as if he has kind of given up on Abi. He doesn't want to try the hemp oils but he doesn't think trying anything else will do much more for her condition..which is true - with each treatment attempt and resistance the likelihood of something else working gets slimmer, but not impossible..so I need to go to someone who won't give up.
Something else I learned at the conference is that there are neuro-chiropractors! There are 2 in the state of Utah and one of them is in Lehi - which is the next town over from where we will be living in Saratoga Springs! It's like physical therapy and chiropractor mixed. I've wanted to get Abi into chiropractic care for a while..I actually tried once and the only reason I stopped was because it was too far away and scheduling was too much..but I've wanted to get back into it for a while, now we've got the perfect option right down the road.

Lastly, because of the conference I found out that Abigail is number 1,190 on the out of state wait list for the Realm of Caring's Charlotte's Web. But like I mentioned, they are planning and hoping to get 3,000 kids off of the wait list this October! So our chances of getting the oil in a few months has just gotten a whole lot higher! Just gotta get the ducks in a row with the letter from our neurologist and then going through the process of getting our red card from the Utah Health Department. I will press that really hard when I get back to Utah at the end of July. I would like to get it all in place by the end of August - but September at the latest!


That's all I have right now. The two main things I wanted to jot down were that Abi and Max are here for each other not just Max for Abi and also that she is number 1,190 on the wait list but with the hefty goal of 3,000 to obtain oil that means we are relatively high up on the list and we have a high chance of being able to obtain it this October!

Oh, and I can see 8+ little white teeth wanting to pop through Abi's little gums. It's going to be so interesting to see Abi with a whole mouth full of teeth! She's getting so big. Love that little girl!

This is AbiNormal

Weird Cycle.

I wish I had all of the exact dates from the last 2 weeks - If I looked and thought hard enough I could probably figure it out - but that's not as important as the over all cycle anyway.

    April 16th - 19th Abi had an at home video EEG on - during those three days she was super uncomfortable most of the day and even puked about 3 times in that time span. She was warm but didn't seem to have too much of a fever - but still just very uncomfortable. Then on Saturday the 19th she just got happy - I didn't change anything - she just was feeling better. She had a few good, happy days with no seizures then started having one a day - then two or three a day - then all of a sudden was having one every hour (pretty much exactly). She did that for 2 days and then just all of a sudden stopped..Again, I didn't change anything with her meds or her food or anything. She had a few more good days of happy, seizure free (or mostly seizure free) days. Then Friday May 2nd she woke up unhappy - she was a little warm so I knew a fever was probably coming again. She stayed pretty uncomfortable all day and the rest of the weekend with fevers and such all weekend long. Big hot fevers that made her sweat and arch like a gymnast and scream - I had to go be in Salt Lake to take my mom to the airport and for an interview that next Monday..May 5th.
     We went up Friday after my graduation and by Monday night her fever still hadn't gone away, but instead got up to 102. So I brought her to the ER just to be sure there wasn't something I was over looking with an infection or something. My gut was that she was just teething or something and there was not a bacterial infection, but I just wanted to be completely sure since we were right next to a hospital in Salt Lake and about an hour away from the closest one in Orderville. We also had gotten a urine analysis and a blood test not too long before this fever cluster (because these fevers have come and gone before) and both came back negative. Same thing at the ER this time. All results came back negative and they weren't super worried about the fever. They said not to worry until it gets to be closer to 105...well, okay. Just try to keep her comfortable...which I have found a luke-warm bath to do very effectively. Also, I asked for an enema at the hospital...get this - it yielded nothing. Weird right? She hadn't pooped a full poop in days but nothing came out with the enema..and even the enema tube came out completely clean! (T.M.I? Oh well). Anyway, we stayed one more night in Salt Lake since by the time we got out of the hospital it was too late to drive home. The next morning she woke up happier and cool. So it seemed she was on the downslope of this fever bunch, but I put some peppermint oil on her skin, kept her pants off, and put a cool wrap around the back of her neck for the ride home anyway, just to be sure. She was an angel the whole drive. She sat back there in her carseat and cooed most of the way. (Max slept the whole way-until I stopped in Panguitch where I fed him, then he slept again).
     We got back to Orderville Tuesday around 3:30 - 4 pm. She's been happy and seizure free since Tuesday the 6th. She made it like that for 2 days when she had her first seizure on May 8th. Then she had another one on the 9th, then about 3 all day yesterday. Today she has started the every hour thing again with her seizures. It hasn't been as consistently every hour as it was the last time - but pretty close. 6:30 - 7:30 - 8:45 - 9:30 - 10:30. Then she didn't have one again until 3:00 then again at 4:00 then her most recent one at 7:00. She's been extremely calm today and smiley as all else, but pretty lethargic and weak - Makes sense though.
    She's just so consistently inconsistent and that's what makes treating her harder. I can't help but hope this complete irregularity in her seizures is somehow connected to her outgrowing them - but I'm also pretty sure that is just wishful thinking..would be nice though! And I'm pretty sure the fevers are connected to her teething. I wonder if the teething causes the fevers which causes the irritation and lack of seizures then it takes a few days for her body to relax enough to allow the seizures to present themselves and that's where the 1 an hour comes into play - then the cycle happens all over again.

This is only round 2 of the cycle that I've noticed - and I called it last week when she was in the middle of her fever bit. I said she will get over the fevers and be fine for a few days then start having more seizures, then have one an hour for a day or two, then be fine. Let's see if i'm right. I don't want this cycle to continue..but if it does at least I'll have an idea of what to expect!

There doesn't seem to be any signs or symptoms of anything else. I also haven't heard anything from either neurologist in a while - but in her case, no news is good news. I'm going to email them tonight and see what her 72 hr at home video EEG showed, if it showed any changes at all with the Potiga. I also want to take down her vimpat back to 3mL instead of 4.5mL .. since taking back the Keppra didn't seem to affect her seizures at all - i'd like to take a look at pulling back on the Vimpat too.

Thanks for visiting! Talk to you all soon!

This is AbiNormal

Help me out here...

Something is definitely up with Abi - she's been miserable the last couple of weeks, but I'm at a loss where to even start looking with her. Not 'miserable' I guess as much as just super uncomfortable. This 72 hour EEG we have her on right now may help point to something - but it also may not. (The EEG is more of a routine thing to take a look at what is going on instead of being a result of something worrisome.) I really think whatever is up with her is unrelated to the seizure disorder..but, like I said, i'm completely at a loss. Here's what's been going on:

- increased puking (again)
- slight lethargy
- fluctuating seizures (from 2 in a week to 10 in a day back down to 1 a day then none again and back up to 2..etc)
- up and down fevers.
- color in her urine
- increased breath-holding, or blue, spells
- prolonged thrush
- constipation

Increased Puking
A while back, I don't remember exactly when, but I think it had to have been after I finished student teaching - so sometime at the end March/Beginning of April, I started putting coconut oil into Abigail's bottles to help increase calorie intake. I gave her the first bottle with coconut oil no problem, but the next bottle the next morning she puked it all back up. I didn't connect the coconut oil with it right off the bat, but after about 3 more days and quite a few more puking (like projectile, through the nose) puking incidents I decided it had to be the coconut oil that was causing the issue. So I stopped adding it into her bottles. It seemed to work for a while where I didn't see any major puking...but then I started noticing it again. I don't remember the first time exactly that it started again but I do remember it was April 8th/9th when I connected the puking to the greek yogurt I had been putting in her bottles. I had been giving her greek yogurt for quite some time by this point with no seeming issues. But one time I rinsed out an old bottle that had had yogurt in it that when I poured out it looked like her puke..so I figured that had to be it. I cut out all yogurt and milk from her bottles and until yesterday that seemed to fix the problem. Yesterday morning she did the puke in the middle of eating thing (where she chokes while eating and pukes up everything she just ate) - Then yesterday evening she spit up more while laying down, then just barely she had a very small seizure then puked everything up again. I haven't given her any dairy or coconut oil or anything of the sort but her puking has been acting back up again. I have NO IDEA what the heck could be going on. I remember a while back she was puking a lot and after asking about it on Utah Kids Facebook page they mentioned constipation could be a reason for puking, and she has been constipated (but that is nothing new). So now I'm at a loss as to what could be causing this. She's been on pediasure for a few weeks now before this so I don't think that is the cause - but let's discuss the other symptoms and see what else may point to something...

Up and Down Fevers
Since I picked up mom in Salt Lake on Monday April 1st Abi's seizures have been all over the place.  We got back down to Orderville on Wed April 3rd and Abi was seemingly normal for the next few days with minimal seizures that we can remember. It started Tuesday April 8th when Abi, Max, Mamma Mia and I went out to Cedar and St George for some errands/doctor appts. Abi was miserable all day long and we couldn't for the life of us figure out why..I thought she was just being dramatic and fussy about being in her  It wasn't until the next morning when I realized she had a fever that she was not feeling well. Her fever would continue on and off for the next 3-4 days. The first day it was there most of the day then I noticed it would be present in the morning then, after a dose of tylenol, would subside all day then come back at night before bed. It continued like that for at least 4 days. The fevers seemed to have gone away until yesterday she started feeling warm again - I, today, gave her her first dose of Tylenol since Saturday the 12th. Today she's been kinda fussy - kinda lazy/limp/slightly lethargic. I didn't notice a strong fever or even an extra warm temperature..but I did give her medicine for it this morning.

Fluctuating Seizures.
We got back down to Orderville on April 3rd - and at this point we had been on an average of 3-5 seizures per day. I remember seeing 1 seizure on Tuesday April 8th (the day she was being really fussy in the car) in the late evening right before we got home (around 9ish) - From that point on for the next 4 ish days we saw maybe 2 seizures total. Then Sunday there was no fever and no seizures, or at least not many..but Monday the 14th she had about 10 seizures that day! Out of nowhere. She wasn't fussy they just came, over and over again. Then Tuesday the 15th she went back down to like 2 (or some really small number). She's now (Friday) gone back down to having very few seizures in the day - maybe 1 or 2 -- today it was 2 very small ones. But she has had multiple breath holding spells - which I don't know if they are seizures or not. I'm leaning towards not, but they can induce a seizure. Which happened once Wednesday evening around 5 and then again yesterday. She has also been having more lip smacking and nystagmus episodes that I'm pretty sure are a type of seizure activity - but those are so mild and random. There is no rhyme or reason to her seizures. I do know there was that Full moon eclipse on Monday and I have heard accounts of children's seizures increasing during lunar events - I'm not too sold on that idea - but it sure is a coincidence that her seizures increased immensely the same day as the eclipse and then immediately went back down. Again there was a connection between how fussy she was and wasn't and when the seizures increased. (more fussy = less seizures, and less fussy=more seizures - so Monday when she was having a lot of seizures, she seemed pretty okay all day but has been relatively miserable the rest of the time.

Colored Urine 
Back at the End of March I noticed something odd (March 23rdish) - When I went to change Abigail's diaper, I noticed there was a discoloration on the outside of her diaper - Like when looking at her diaper from the outside it looked like there would be a lot of pink on the inside..but when I opened the diaper there was no discoloration at all. So I brushed it off and just thought it was weird. The next morning I saw the same thing..But the next morning I saw the discoloration from the outside, but this time there was actually a red spot in her diaper. Luckily I had a prenatal appt for Max that day so I brought in the diaper so I could show the doc and see what he thought it might be. The doc gave me some urine collector bags to put on Abi to get a sample. At first I thought it was blood in the Urine, but now it's more of an orangey color that I'm not sure it's blood anymore. Since I had only seen the discoloration in the morning I decided to wait to put the collector bag on at night. At 5:30 am she woke up screaming so I took what I collected and put it in the fridge to bring into the clinic the next day. When I took the sample to the clinic - At 11:30am - the urine sample was cloudy as all else. The doc took one look at it and immediately called in some antibiotics for Abigail. They wanted to do a urine culture but the sample has to be no older than 30 minutes in order to be a good sample, so I was sent home with another urine collector bag and told to bring back her next sample as soon as she lets it out..so we did just that. They couldn't get the culture to grow anymore bacteria which all the doctors I've talked to said that is a good thing and it means there is no UTI. So since she wasn't acting like she was in pain, there were no signs that pointed to an infection, and there was no rhyme or reason to when the color would show up - it wasn't every morning that I would see it, but it was only mornings - I decided to finish the course of antibiotics and see where that left us. Well, the antibiotics gave the poor babe thrush in her mouth (that got diagnosed officially on the 29th of March) and has stuck around since! AND she is still having discolored urine! It's no longer only in the morning that I see the coloration, but there is still no rhyme or reason to when it shows up - or even why. If you read my last blog you would know that I thought maybe the concentration of her food was maybe a culprit and since changing to pediasure we haven't seen anything-but of course the very next morning after that post I saw a lot of discoloration - probably the most that I had seen in any of her diapers so that rules that theory out. We have done blood work as well and nothing in the blood work pointed to kidney issues..so there is nothing that we have found that could or would cause this discoloration. There are still a few more tests out there that the nephrologist suggests to run - so I will get those done and see where that leads us.

Increased Breath-Holding or Blue spells
We've noticed this in past, where her seizures seem to slow down then these breath holding fits get more frequent..That's why i'm not sure if they are seizures themselves or just can induce seizures. She will be calm then get really upset all of a sudden and then go into a blue fit. Or she will be fussing uncomfortable like then get more worked up to a breath spell. She's been arching really badly again which leads me to believe there is pain somewhere. I used the think the arching was only related to pain in her belly, but I think arching is just a pain response whether it's a fever or bellyache, or whatever.

Prolonged Thrush
Just how it sounds. She has had thrush in her Mouth since the end of March. I've had her on liquid nystatin 4x/day since March 29th. I even tried to put a drop of OnGuard essential oil in her nystatin, but I think it burnt more than it helped. So I switched back to the regular stuff - she takes it a lot better, but the thrush is still hanging around. I've tried to be diligent also about using a new nipple with each bottle and disinfecting the nipples before using them again. My sister said to boil them - haven't really done that yet - but maybe I will start. I was just running them through the dishwasher to disinfect before using again. But I would switch the nipples out and use new ones and she hasn't had a pacifier in a long time to try to avoid that. Just recently I gave her one just to calm her down but it made it's way into the sink after she was done with it and a new one was given to her that night when she needed another calming down. But the thrush has been around.

Constipation
Like I said, this is nothing new - at all - as long as I can remember she's been constipated. I do the Vaseline trick and use suppositories frequently. It seems to help some discomfort for a while but recently (the last 2 days) I haven't been able to get a lot out with the tricks...but enough to relieve some pressure. After which she seems a lot more comfortable than before I do it, but it doesn't last forever..something makes her uncomfortable again..but I don't know what.

So overall she is just so sad right now because something is bugging her - but what in the world?? Like I said, whatever it is I think it is unrelated to the seizure disorder. I think that is it's own thing. I also don't know how many of her symptoms are related. I'm sure there are some that related but where they are so off and on and there seems to be little rhyme or reason to any or all of her symptoms it's so hard to tell what's related and what's not. I do think the constipation is related to the neurological disorder, as digestive system issues are connected to neuro conditions. But I just don't know what else to take away from this all. Anyone have any experience with anything like this? I've spoken to all of her doctors about it but they can't seem to come up with anything either. So I wouldn't mind suggestions to take to the doctors. There are a few more things, like I mentioned, that one doctor has in mind to do so we will go that route..but I talked to the epiletologist and he suggested I talk to her pediatrician - I talked to the pediatrician and he suggested I talk to the neurologist. So we are at a standstill of what to do. It may be the medicine...there is that 1-3% chance of that chromaturia thing I mentioned last blog.

I don't think whatever is going on is hospital stay worthy, but I would like to know the root of the problem so we can fix it! I can't stand to see her so uncomfortable. I hate to see regression. Poor little lady. What a trooper she is!

With all of the puking and seeming tummy aches I am really opening up to the idea of the g-tube...not entirely sold but can't help but to think if it would solve some of these issues. I've never been fully opposed to it as I can see it's benefits for some cases, but I just don't feel it's right yet. I don't want Abi to think she can get full without eating. I want her to still get that oral stimulation as it helps with potentially talking later...I don't think we are at g-tube point yet - but I do think it may be necessary in the future if things continue this way. I'm not worried about her weight yet, but again, maybe in the future. I just can't see how if we put too much food in her belly or food that doesn't sit well with her stomach that it still wouldn't puke out even though she didn't eat it orally..I just don't know. I will be doing a lot of research on g-tubes and their pros/cons the next little bit. I would just hate to jump into this with it really not being necessary and causing a regression that wouldn't have necessarily happened.. I'm very torn about this.


This is AbiNormal.