What a day.

Today was surgery day for Abigail. She did wonderfully! It was relatively a long day but as is any day you go to the hospital. We got here right on time at 11am to check in for Abigail's surgery, and everything went smoothly there. However, the O.R. that she was scheduled for got behind so we ended up waiting for quite a bit in pre-op. Poor Abigail was so hungry-she hadn't eaten since 7:30 in the morning and it wasn't until after 1pm they finally brought her back. With that being said, however, she slept forever this morning! She was up at 7:30 to eat then went back to sleep. I then had to wake her up again to give her her medicine at 9:30 this morning, but she again went back to sleep again until after 11!  She was finally woken up by being weighed and measured-which she still hasn't gained much weight back, but she's 23.5 inches long! So that's pretty neat! 

   Once they did bring her back we had to go check in the waiting room and I was expecting the surgery to last 45mins to an hour but by the time Heidi and I went downstairs to the cafeteria, got our food, and brought it back up they were done with the surgery. I had just barely sat down and hadn't even finished dressing my grilled chicken sandwich when the doctor came in! I was shocked!  He showed me pictures and explained what he did and what to expect next. Now, I'm very sorry, but in my last post I told you all the wrong procedure that the doctor was to perform today. I thought the name of the procedure was tracheoplasty-but instead it was a supraglottoplasty, or "above the glottis"plasty. He also did a microlaryngoscopy and a bronchiolescopy as well-all of which I got pictures from! :) So really the doctor just went in with a camera and scissors and cut off the extra skin that was closing her airways. So far her breathing has seemed to improve, although her voice sounds a little raspier (as you can expect from a throat surgery). She has found a decent amount of sleep today, but right now she is over in her bed fussing a little bit. Her clonazepam is scheduled to give her at 8oclock here and I don't normally give it until 10-so the sleep aid in that is kinda wasted-good thing it's only tonight huh?

Anyways, so today we ended up waiting longer to get Abigail into surgery than we waited on the actual surgery procedure (or procedures). The surgery was successful as in she's escapes with no complications minus being in pain..which we are giving Motrin and Tylenol for..and we just monitor to make sure she's not aspirating or desaturating. So far so good (no Jinx!!)

But on a lite note! I was able to see some friends from the seizure Q and A that I went to a few weeks back! That was fun. They came to visit (they were already here with their son, Perrin) so they stopped by. Then they took Jaren and I out to dinner at the lion's house pantry. I had never heard of it before, but it was wonderful! So nice to see that sweet little family again. 

So overall it's been a relatively good day. Despite the pain and activities of the day Abigail has still been able to find moments of peace and comfort. I'm hoping that's a glimpse of what is to come! But for right now all I can ask is she find some sleep for the night. 

Thank you so much for all the support, love, and prayers you guys are showing Abigail and all of us. Keep em coming! something is working!! You are all great!

This is AbiNormal. 

It's set

Surgery for Abigail is officially set for Thursday May 30th. She will be getting a tracheoplasty - or plastic surgery of the trachea. It is an inpatient surgery so Abigail will spend at least 24hrs in the hospital pending any complications. I have very very high hopes for this surgery. I'm hoping it will allow her to breathe better which will help her eat better which will help her gain weight and give her energy, in turn allowing her to be able to properly use her muscles. Maybe I'm too hopeful-I know it won't be an immediate change-but I am still hopeful it will change quite a bit about her struggles.

However, we did have physical therapy today and she had made some major improvements from last visit to this time! She tracked a toy 3 out of 3 times and held her head up the entire time she was on her belly! During all that she was looking into a mirror and listening to sounds a toy was making. Her arms are still a bit tight but if you can get her calm then you can stretch her arms out with little struggle. But if you try to move them at all when she is angry-well, good luck! But the P.T. waa very pleased with what she saw today, and so was I!

After the P.T., Abigail and I went to Walmart for a few things and met this really nice family-together they will have 15 kids! That's crazy huh? He had 9, she had 5 and she was pregnant with their baby. She was only 31! The family was truly great though, super nice-we visited for quite a bit. They asked why Abigail "got" to be on oxygen (I thought that was a neat way to ask) so I explained her malacia and all that..I also in theconversation mentioned that she was born with epilepsy and found out that one of her boys (who was there with them) was epileptic when he was a baby! I asked how long until he grew out it and she said it was about a year for him. Towards the end of our visit she asked what medications Abigail was on and when I said topomax she rolled her eyes and said "ugh. I hate topomax-it made my son so mad". I wonder if that may be the same for Abigail and it might be a cause of some of her anger fits she sometimes randomly throws. Idk. Right now I attribute everything to the inability to breath fluidly, so maybe after the surgery if there is still something evidently bothering her we can look into a medicine shift-or maybe a GI thing...

Speaking of GI thing, I switched her formula to nutramigen by enfamil. This is the formula that is for milk protein allergies, where all the proteins are already broken down in their smallest state so the body doesn't have to do any breaking down or digesting, just absorbing. We tried similac's alimentum, but Abigail did NOT like the taste of that one AT ALL. She would latch onto it for a few seconds then scrunch her nose, pull off of the bottle and get really mad at me for trying to give her this nasty stuff! What was I thinking! Nutramigen, however, she can tolerate. I finally started it on Saturday. There were moments that she was screaming bloody murder in what seemed to be just sheer pain. She couldn't poop on her own at all either, but was very gassy, so I would do the q-tip trick on her and a tiny little amount of really sticky, yucky green poopies would come out-but just a very little bit. I figured it was enough to receive some pressure-but there was obviously more in there. After we started the nutramigen, she was able to calm down a little bit more. I mean, she still gets fussy and arches her back, but it doesn't seem to be to the extent it was before. Also she had pooped on her own everyday for the last few days! Some of them have been more than once! And the color is back to the yellow seedy that we like to see. It also has only been little amounts at a time-but it's the right color and coming out by itself, no q-tip needed! So that's great! ((Sorry for those of you who don't have kids and don't know how normal it is to get excited about them pooping!))

So things have been looking good for Abigail in the last couple of days. She did have a bit of a harder weekend but we made it through. 

When we got home last night I ended up

giving Abigail a bath-and she LOVED it! She was having the time of her life. She was just smiling away and obviously enjoying it, I didn't want to take her out! It was so fun to see her so happy! She wasn't as happy when she had to get out because then it was cold! But once out and warned up she got a bit happier again. I also think she knew we were home and she liked that as well. Too bag tomorrow we go back to salt lake again! ((Like I mentioned, we just got home last night from salt lake-now I get up and leave to go back to salt lake again!! - lots of driving!!)) good thing Abi is such a trooper!! She's honestly amazing little baby with all the AbiNormal stuff she puts up with and can still be a happy baby-even if just for a little bit at a time. Those small short moments of happy make all these struggles worth it! They almost make these struggles look minuscule also-that one day she will be all happy and no struggles! 

Anyway. I think that's all I have for now anyway!

This is AbiNormal. 

Can't wait to have a wireless baby!

From my last post two days ago to today Abigail has been on and off an oximeter (a device that measures oxygen saturation), seen an eye doctor, her pediatrician, and is now on oxygen. 

The timing of the oximeter couldn't have been any better because I needed to take Abigail and the machine to St George to get the results read by her pediatrician-well it just so happens I was going to st George the next day for her vision appt anyway and weight check with my pediatrician anyway! So they came and set us up with the machine that day! (2 days ago-5/22/13). So from about 2pm on 5/22 to 2:15pm on 5/23 Abigail was on an oximeter. Since shr was hooked up, she didn't leave the little corner of our house that has her swing in it. We slept in the front room and everything.  I could have taken the monitor around the house with me-but the wires were just such a pain that I didn't. We did get some good information from that though...more on that later. 

Yesterday, after we dropped off the oximeter (my baby was finally wireless again) I took Abigail to the eye doctor. This doctor, Dr. Terry, was a very nice guy (and extremely handsome). He said that she is slightly more farsighted than those of her average peers-but let's be honest, when has Abi ever been like her average peers? I mean, seriously- so that didn't shock me. But he said its not something he is super worried about right now and we'll check again in six months. I knew there wasn't going to be much he could do now, though it is nice to know nothing major is pressing right this moment. After the eye doctor visit we went over to her pediatrician who read the oximeter results and got worried since it showed she de-saturated (her oxygen levels went down) quite a bit. So he ordered her to be put on an oxygen tank and called Dr. Meier-her E.N.T. - Dr. Meier was impressed enough by those results also that he wants to push through with the surgery-NEXT WEEK! So Abigail will have throat surgery next week at primary children's. The operation is called tracheoplasty which translates into "plastic surgery of the trachea". Basically, they will go in and take out the flappy part of the trachea, and, to my understanding, put in a more rigid part in its place. As scary as surgery sounds I am way excited this was the end result. When I knew surgery was an option, I, in my heart, felt strongly that this was the option we should pursue. With this surgery she will be able to breathe better, therefore eat better, therefore have more energy to grow and maybe control her muscles better. I truly didn't understand to point in waiting for this one. This malacia is obviously something that she is struggling with, and instead of making her wait 2 years to "grow out of it" like everything else she is dealing with, lets deal with it now! So yes, don't do surgery unless it is necessary, but I think this has way more pros than cons. The ONLY con is that it's a surgery and with that come he normal potential complications-but I know we are making the right call here. 

Until we get that surgery, however, she will be put on oxygen. More wires. We just barely picked up the oxygen from the healthcare place, learned all about it and how to use it, then put it on her and BOY WAS SHE MAD!!! We stopped to get gas and her dad got back in the car after pumping it and said "a lady out there heard Abi and her eyes got real big." Haha that's funny! I honestly thought she was never going to be able to fall asleep. I'm sure it's not hurting her, if anything just kinda freaking her out, like "what the crap is this, and what's it doing in my nose!?" I don't know if I've said this is another post of mine, but she HATES her nose being bothered even just anyone touching it-I can only imagine the loathing for this thing. Right now she is finally asleep (mostly-every so often she'll make a frustration noise, but overall things are good.Honestly though, for a minute I doubted if this oxygen was really better for her because it made her so so SO mad and when she is mad is when she goes into those breath holding things. So at very first I was like "the oxygen tanks are doing more bad than good!" But we'll see if she gets used to it and calms down a bit. Poor girl. 

Also yesterday we decided to switch her formula to the pre-broken-down stuff because I have to fortify my milk with it and the regular stuff just hurts her little tummy SO badly. My doctor gave me a HUGE bag of similac alimentum..I knew she didn't like similac last time we tried to give it to her so I wasn't expecting her to like this one-but he was giving me a BOAT LOAD and I wasn't about to be the ungrateful, nose-up, picky mom. I was very grateful and was just hopeful she wouldn't mind it since it would be easier on her belly. Well, she didn't like it, AT ALL. She would latch on and suck for like maybe 5/6 seconds and then scrunch her nose, pull off, and yell at me. "What do you think you are trying to feed me, mom? Where's the good stuff? Where's the beef??" - that's what I imagine she would be saying anyway. After much of a fight put up(and the longest bottle feeding ever) she did end up taking 3 of the 4oz, so I was okay with that. I didn't want to be picky with the doctor, but now that I tried it (twice.. I didn't give up after just one feeding-it happened two times) I will call and ask if he has any nutramigen he can share-ill even trade him! I may go pick one up from the store first though because I do think its worth it to get her started on the stuff that would be easier on her belly sooner, and what's $35, right? Haha 

So, nothing major in the eyes..we'll see how the oxygen quest continues and surgery next week. The good news is we are only gonna be dealing with the oxygen until the surgery-so the sooner the better!

Until we put the oxygen in/on her she was having a pretty good day! She would eat, then I'd lay her belly down on her boppy pillow and she would just chill and look around till she got a little fussy. I would then put her in her swing and, after a bit of fighting, she went to sleep! I also got her to follow her backpack for a small second! Her backpack is a black and white pattern-I don't know why I didn't think about that before! But she totally focused on it and even followed it moving once! Awesome! 

So overall good day. She's back awake fussing with the oxygen now. Let's see how this goes. 

Oh, and according to my sister Margo's contact on a Facebook page with other parents who's children have epilepsy, these extra complications are NOT related to her epilepsy. These are all AbiNormal conditions..What can we all expect though, right? :) I wouldn't have it any other way!

This is AbiNormal. 

This is Why I Like to Post at Night

OKAY, so this is why I like writing these things at the end of the day and not the beginning - because I like to add in things that happen that day, but I don't know what is going to happen during the day, like how many times she will sleep or how sad or happy she will be until the day is over. But today I started to write blog early in the morning - like 8:30am or so - while I was waiting for Abigail to wake up to eat (I didn't go to work today because Sheena couldn't tend--blessing in disguise). It is now 6:45pm and I am just getting the chance to sit and finish the day's events while Abigail is sleeping again. (Yes, AGAIN! :)) BUT! after I was bragging about having the seizures under control and how we were doing pretty good Abigail decided she was going to have a seizure...a big one.This one was a doozy. It lasted about 2 and a half minutes and consisted of 3 different kinds of seizures. It was different from any other seizure that I had ever seen of hers. This time she actually had jerking motions where as before hers were all very tonic (stiff). Afterwards she was COMPLETELY limp and EXTREMELY lethargic. She just laid there with no muscle tone at all and stared off for about 5 minutes. I could tell she was with me still because she startled and responded to a diaper change. (If anything at all good came out of this seizure it was that she was FINALLY able to pass the bowel movement that she'd been working on for almost a week! - seriously, tomorrow would have been 1 full week with no poopy - no wonder she was in so much pain! - If anyone has any remedies or tricks they have used I would love to try them! I've tried belly rubs with and without lotion, doterra's essential oil DigestZen, bicycle legs, and tummy time, but nothing worked.)
The whole thing started with one of those breath holding things that she does that I hate so very much. Those breath holding things have been happening a lot more frequently (pretty much starting after saying i'd be okay with never seeing one again in one of my earlier posts-my bad), but I had seen 6 since the beginning of May - including today's. And that is just counting the ones that lasted long enough to result in a seizure. She goes blue and holds her breath way more often than that- at least once a day if not more - but the ones that suck most are the ones where she goes till she's about to pass out then has a seizure afterwards - and there have been 6 of those that I have written down.

Well I have wanted to get a video of this breath holding thing for a while to show the doctors because they all say she is too young for "breath holding spells" and don't really have an answer as to why she would be doing it, maybe seizures, maybe something to do with the malacia and it blocking the airway - so I thought if they could see what I mean it might give them clues that I wouldn't have thought to tell them. Anyway, she went into this breath holding thing so I grabbed my phone and started to video--I kept the video rolling so that they could see her seizure and breathing afterwards - that was a lucky time to be able to catch the video because I was able to get the whole seizure videoed. I immediately called my neurologist, pediatrician, and the NICU doctor. I left messages with my neurologist and pediatrician but got a hold of the NICU doc - who was no help, except succeeding in getting me not to worry about the destruction of the seizure. He said it sounded relatively short (after 5 minutes is when you are really supposed to start worrying) and that with her pretty intense and complex seizure history to just get a hold of my neurologist and see what he says - but not to panic and run out to get her levels checked or anything...but other than that he wasn't very helpful and I was kinda bugged by some of the other things he said. Eventually both my pediatrician and neurologist called back..the neurologist says its time to increase her dose of Keppra - so that is our next move, but we have to figure out if I can still give her crushed pills or if we will need to switch back to a liquid solution (YUCK!).
My pediatrician had more to say about the reflux and malacia maybe being a cause or a predecessor to the blue spells. He wonders if these breath holding things are actually apnea and the lack of oxygen from them is what is causing the seizure, as that can happen. I had already for a while had a feeling that these breath holding things were not seizures but were a reaction to her pain from reflux or tummy issues but then caused a seizure at the end (I even had that written in my Abigail journal before I talked to him!). He taught me about two types of reflux and them possibly being the reason for this apnea spell. The first is obstructive reflux, which laryngo-malacia is an example of. Another example would be if the milk comes back up and blocks the airway, or if aspiration is occuring (aspiration is liquid going into the lungs) and blocking the airway that way. The other kind of reflux is called central reflux and that is just basically caused by pain - or results in pain - or something like that. Either of those could result in an apneic (?) episode. He is going to look into getting her an oximetry monitor - a 24 hour oxygen study - to determine if she is de-saturating (her oxygen levels are going down) or if she is going apneic and how often if either of those are to occur. This would be something we do at home, so hopefully if she is gonna have an episode it will be hooked up to the monitor so we can get some more information! He also suggested to take a closer look and see if right before the episode that her malacia labored breathing acts up..there may be some sort of correlation. At the end of that call I again felt like I had gotten a lot of "good" information and have been able to relax a little bit. But let me tell you - that seizure today wore both of us out! I had gotten so comfortable with no seizures that I let my guard down and this one really shook me up. Abigail is back to being herself - just slower, weaker, and more tired -- makes sense. Seizures are EXHAUSTING. She has, though, gotten quite a bit of sleep today! That's good too. So although having seizures suck two good things did come out of if - she was able to poop and sleep - both of which she needed pretty heavily.

Now I also know to not let my guard down so far as for the next 4 years a seizure could happen at any time for any reason, and that is AbiNormal. But also to not let that run my life so that I would change anything that I am doing. Just keep on keeping on. I am doing good, I am doing what I am supposed to and all that I can be.

Oh, Abigail. Honey.

 Such is life. Such is epilepsy.

This is AbiNormal

5 Months?!

Abigail Kate is 5 months old today. Dec 21 - May 21. What a ride we've been on and we've still got quite a ways to go!

Last weekend I had the opportunity to go up to Salt Lake for that seizure Q and A forum thing hosted by primary children's. I got some questions answered and, as I expected, some other parents asked questions that I wouldn't have thought of. I realized here that Abi's condition is, even though known of, still not very common..No other child there had this same cause of seizures. Many of them had "focal point" seizures which is where the seizures are started from a specific, localized part of the brain and can be treated with surgery that removes that specific part of the brain. A lot of the time got spent on the surgery options (which is not an option for Abigail because her seizures are generalized, meaning they start from random parts all over the brain. Abi and I met the most incredible family at this event, their son was absolutely beautiful. He also has generalized seizures, but he is two (or almost 2) and they still haven't been able to diagnose the cause of his seizures. They have tried and tested about 8 medications before the ones they are one now, and despite all of these challenges they still have the best attitudes! Ironically, the mother of this amazing family is from Kanab! That's so cool to me! I got in contact with her mother (the boy's grandma) who still lives in Kanab (she is as sweet as her daughter) and hope to be able to get back in contact with the family when they come into town.
  Over all, I am very glad that I traveled up for this event and realized that Abi and I are doing good. There is not much more we can do for the seizure condition that she has and not really much more that we can know...and it could be so much worse. Right now we have the seizures under control with medication and we know everything the doctors know..this gene mutation is a relatively recent find in the medical world - which is good and bad. Not bad per say, but it just means there isn't a TON of information on it right now, but good because that means there may be more information in the future - but for now, we are in a good place. There is nothing left for us to do with the seizure side of things except keep an eye on her as she grows and adjust the medication as the time comes.  I did get to ask Dr. Sweeney some specific Abigail questions at the end and was able to show him a video that I got of these "micro-seizures" that she does several times as she is about to fall asleep. Sometimes upwards of 10 or more times which, obviously, affects her ability to fall asleep. He agreed with Dr. Larsen that they might be "myclonic jerks" - the same things that we adults do when it feels like we are falling - but they could also be "infantile spasms", which would result in a steroid treatment if they are but we would need an EEG to tell us for sure. Dr. Sweeney said "the only absolute in epilepsy is there are no absolutes". Not sure why I like that so much, but it just brought me a weird sense of comfort.

I knew I was going to stay the night up in Salt Lake so I asked my pediatrician if there was any way that he could get me in with an ENT up at primary children's (I'm so close to one of the best hospitals in the world, it  would be a shame not to get in) well, he worked his magic and called up there and an ENT was willing to squeeze me in first at 8:45 am. Thank you Dr, Meier! (pronounced like 'myer') He was wonderful, he was very to the point and seemingly intelligent. He gave her a scope -- a camera down her throat -- to see inside, and he let me watch too, so I got to see Abigail's adenoids, epiglottis, and vocal chords...how many other mom's can say that? Haha I thought it was really neat. She was telling us her opinion how she felt about the scope so I even got to see the vocal cords in action! He did confirm that she does indeed have laryngo-malacia. He says all the symptoms are classic (that's a first), but severe (there it is-Abi keeping it AbiNormal). He says there may be some more damage or something more severe in the trachea, but it's doubtful because of how classic the symptoms are. There is a possible surgery option with this condition, but that is dependent on other factors such as: if this condition is affecting her ability to sleep well or affecting her ability to gain weight then we would go in and surgically remove the extra tissue hanging out in the larynx-if we don't see the need for surgery then she will just outgrow this by the age of 2.  If we did get the surgery it would allow her to breath more easily and probably cause a rapid weight gain as not as much energy needs to be spent on breathing anymore. I wonder if that goes along with her "floppyness" also? Like so much energy is going to breathing that she just doesn't have enough to gain weight and supply energy to her muscles too? IDK. We will know in about a month if she will need surgery or not. We put her on reflux medicine - Dr. Meier and Dr. Larsen both seem to agree that she still has reflux really badly which is attributing to her lack of weight gain - Dr. Meier  informed me that reflux and malacia go hand in hand and actually may be a vicious cycle - kinda like a chicken and the egg - so with this malacia, Abigail likes to hold her head way back to kinda open the airway a little bit, which also opens the esophagus, allowing reflux to happen more easliy. And then reflux perpetuates and kinda intensifies malacia - rather frustrating. So we increased her type and dose of reflux medicine and will wait to see if that helps her gain some weight. We will also do a sleep study at the beginning of June sometime to determine if this condition is affecting her ability to sleep. If either she does not gain weight, or her sleep is affected then we will look more closely at surgery, but until now we just wait. What is wonderful though is that this sleep study will come with an EEG so we will use that to double as the EEG to determine if these "jerks" she does while falling asleep are just normal body twitches or "neonatal spasms" so that is awesome. But I walked out of the ENT office very positively with a lot of good information. I like visits like that.

Overall - GREAT visit to salt lake.

Until next time-
This is AbiNormal

Oh, Abigail

I find myself often saying "Oh, Abigail...you're just fine, honey. It's okay. You're gonna be just okay"...and I know she will be one day - but after yesterday I've come to realize that she is really uncomfortable. There seems to be a lot more going on than meets the eye. I always knew she was uncomfortable - but I didn't realize how much could actually be ailing her.

We went the the speech pathologist yesterday - I wasn't too impressed -I mean the pathologist herself was really nice and sincere, but I didn't feel like I got anything new from her. I left with instructions on different ways to hold Abi (ways that I already hold her in normally) and some new positions to feed her in...which are pretty awkward. Oh, and I left with a recommendation to use essential oils....again, which I already do. Overall, not much to work with. She did, however, agree that her breathing ailment sounds like some sort of malacia [muh - lay - sha], (which just means softened throat pipes) and suggested that it is possible that Abigail likes to hold her head back or to the side so much because it stretches out her neck and possibly makes her less than solid throat (whether it be trachea or larynx we don't know) a little more rigid, in turn making it easier for her to breath. That is an interesting thought, and it makes complete sense. But she wasn't worried about Abigail aspirating -- swallowing liquid into her lungs -- and didn't see a need to further speech therapy or eating sessions. So that was good. But I left her office thinking "eh"...like I would have survived okay without that visit.

Right after seeing the speech pathologist we went to the see her pediatrician. This pediatrician is a gift from heaven because his dad is a neurologist, so he has a background and a little understanding of neurology and with Abigail's condition it's nice to have someone with a slight background. And if he doesn't know the answer, he is one call away from one. Also! his neurologist dad is the same guy who trained the epileptologist that Abigail and I see. How neat is that? So it's a nice circle and I'm excited to have him. However, the first time I went to visit him I was not super impressed, he didn't seem to care about what I had to say and kinda blew off my concerns with a "let's visit back in a month and see if the concerns are still there" -- well they are, and I was determined to get what I wanted this time -whether he agreed or not. What I wanted were 3 specialists - G.I, (digestive system) Vision, and an E.N.T. (Ear, Nose, Throat). This visit he was much more caring, sincere and almost sorry for the last visit and how he kinda blew it off, because he heard how bad it actually was. He was much more proactive about his approach this time than last and I like that. This visit we went in, he heard her breathing and within seconds was sold that she needed to see an E.N.T in the next few days. He ordered a barium test, which is where Abigail will drink some special mixture that shows up in an x-ray to be sure that she is or is not at all aspirating. We will be getting her scoped to get an official diagnosis on this labored breathing thing to confirm that it isn't anything more serious than malacia, or see if there is something else going to that would cause more concern. He also suggested a sleep study to determine if she maybe has sleep apnea due to this breathing issue (this test is not for sure, he just suggested it to the E.N.T - but the E.N.T has to see the need and order it). He also believes Abigail still has pretty bad reflux that is affecting her eating because she hasn't gained weight in a month, she hasn't lost weight, but she hasn't gained anything. He sent a referral to a gastro-neurologist (an even more specialized G.I) so they could take a look and see if there is anything we can do. Meanwhile he prescribed more reflux meds - this time we are on prevacid...a step up from the previous zantac. It's so frustrating to me. This isn't the first time Abigail has had weight issues, and I know it's not my fault, but I can't help but feel like i'm not providing for her like I should be. And finally, he did also agree that her eyes are not perfectly aligned and sent a referral for the vision specialist. WHEW! I got all of them! And with good reason, I'm not just a hypersensitive crazy mom  - she really was uncomfortable for a reason...Although there is still so much to do, it gives me great hope that there is something we can still do for her and she is not destined to be uncomfortable forever.

During this visit I was also able to mention her breath holding things that she used to do and has done TWICE since that last post I wrote about never wanting to see them again...he seemed relatively concerned about them. I know that a seizure happens right after that episode, but I don't know if that breath holding thing is a seizure in itself..he mentioned that it could be her airways closing in and making it hard for her. So that would suck. BUT! Something I forgot to say before is that if we do get and official diagnosis on this malacia thing then there is possibly things that can be done for it as well to help the healing and strengthening of them.

I still don't know anything yet, except there is still SO MUCH TO DO! We have until August before our new insurance kicks in and we have to pay the deductible again. Oh, Abigail. What am I going to do with you?

This is AbiNormal

UPDATE: we got the E.N.T visit scheduled for Friday in salt lake (since ill be there anyway for the seizure Q and A thing tomorrow) and a vision appt for next Thursday in st George! Now I just wait for the gastro people to call!

So little time

I have so many days I need to tell you about! Every time I wanted to write about the day something came up and I wasn't able to - So I thought "I'll just write tomorrow about both days!" Well, now I'm finally writing about 5 days! Woah. Let's go back 5 days to Thursday May 9th.

5/9/13 and 5/10/13 were very sad days for Abigail. She was having a really rough time with the whole sleep thing again - very little if any sleep was had those days for her. I actually contemplated putting her back on her day dose of clonazepam - she wasn't throwing huge screaming fits all day long like the last time we did gave her her daily dose - but she was not at all able to find comfort  or sleep - she was just miserable all day. EXCEPT she did SO GOOD at the Physical Therapist's office on Friday the 10th.

The P.T. visit was so good on so many accounts, I learned some really good things! Abi does have a low neck tone so her head is a little floppy still. She can hold it up and does have decent control of it when she does - but she just doesn't choose to hold it up often. Her arms are really tight, she likes to keep them tucked in close to her body. One of the stretches we need to do with her is pull her arms straight up over her head and she fights it pretty good. She's really strong! The P.T. says this tightness in the arms is probably due to the lack of control of her head. It seems as if she tries to compensate her lack of head control with her arms by holding them really tightly, and when we lift them up over her head she may feel a little out of control I guess. But her lower body is in excellent shape says the P.T. She has excellent control of her lower body. She (P.T.) also agrees with me that Abi has a vision 'deficiency', if you will, not that it is her expertise, but it fits with the not focusing on anything and even the not using her head as much as she could. If she doesn't have any motivation to look up and focus on something, why would she look up? Or keep her head up? At the very end of the visit we made notice that when Abi does focus on something it's typically farther away from her than right up close, so the P.T. said she might be farsighted which is (and I quote) "Abnormal for a newborn - normally they are nearsighted" -- There it is! If it's abnormal for a normal newborn that means it is inevitable for Abi! haha

Saturday 5/11/12 - Abigail took 2 naps today! We were out of the house all day for Jaren's baseball tournament (he is a baseball coach) and she nursed the whole first game then couldn't find sleep until we went on a short drive down the street and she fell asleep! She slept for quite a bit! -about 2.5-3 hrs then we went back to his second game where I fed her again but this time she was able to fuss herself to sleep in her carseat! She slept through most of the game as well as most of the car ride home! Between naps she was rather miserable for most of her awake time but we were still able to play a little bit.

Sunday 5/12/13 - Overall today was a relatively sad day for Abigail but she took 3 NAPS TODAY! It was awesome. She fell asleep during second hour of church and would have slept through the rest of church but during sacrament meeting (during the actual sacrament) she started her breathing thing that she does where she breathes loudly and raspy-like..it really wasn't that loud but her dad was all worried about it and making other people upset so he had me try to reposition her. That didn't work but I didn't want to keep messing with her so she would stay asleep. Also, her awake fussy noises are much louder than her sleep breathing noises anyway. Then the guy sitting in front of us looked back and that was enough for Jaren he made me take her out of her car seat and give her to him so he could take her out the room - which woke her up. Ugh. I was sooo frustrated because she doesn't sleep often! And it takes so much for her to actually fall asleep that once she is asleep I want to do anything in my power to keep her there. It really wasn't that big of a deal, and I PROMISE no body cared, but he thought it was, he's very sensitive to any noise she makes..I would have been more mad if she didn't go back to sleep at all that day, but she did so that made up for it and I got over it. She fell asleep all by herself in her swing. It wasn't a non-interrupted sleep as I think she is still dealing with belly aches and what not but it was still sleep. THEN, a third nap came and I was shocked!  The family went for a walk in my new bike trailer/stroller that I got for mother's day (THAT I LOVE SO MUCH!) and she slept through the whole thing! I like to think that 3 naps was Abigail's Mother's Day gift to me. She's so good to me.

Monday 5/13/13 - Abi got 2.5 naps today. She slept a few hours for Sheena today which is awesome and then her and I got a really good long nap from like 1:30/2 to 4:30! It was so nice. It's getting warmer outside though so we both woke up sweating a little bit. Haha Also today I went to Zumba again, I love when I get to do Zumba - the first part of the class Abigail was just sitting in her car seat switching between just chilling there and fussing a little bit, so I let her be, hoping she'd fall asleep. Halfway through she got a little bit more upset so I picked her up and finished the class bouncing around with a baby in my arms - Abigail LOVED it. She even smiled a little bit! SO fun, I am next time going to try to put her in the baby bjorn that I have so I can do the arm movements too. I have tried to put her in it for stuff around the house but she hasn't seemed to like it at all, but maybe if she's bouncing around she'd like it more? She's at that age where she hates being put down right now - but I hate putting her down, so it works out. :P She had a few moments of inconsolable misery but overall I would put today down as a good day.

I can't wait to get my bike trailer hooked up to be able to go on bike rides with her. She loves to be outside and moving but I hate running, and walking isn't enough exercise for the amount of food I enjoy eating..hahah so a bike will be wonderful! I also hope I can get her to enjoy the Baby Bjorn again so I can go on some hikes this summer with her.


Today (5/14/13) we are going over to St. George to see a speech therapist for a swallow evaluation that her pediatrician recommended after hearing about her breathing and drooling issues. And then we go see her pediatrician again for a well baby 4 month check up and a referral to see some specialists - Vision, G.I, and Ear, Nose, Throat - So I have NO idea what to expect today, specifically with the swallow eval - but I hope it's good stuff! This upcoming Thursday (5/16/13) Abi and I are headed up to Salt Lake for a seizure Q and A forum with 5 seizure experts. I am very excited about that. I assume it is going to be set up like a press conference where the panel of 5 experts are sitting at the front and we just raise our hands and ask questions that we may have about our child/seizures/treatments/diagnosis/whatever we think of. I have really high hopes for this night as there is still so much to know! I don't have a whole lot of questions myself, but I'm hoping the other moms/dads have some q's that I wouldn't have necessarily thought about myself. I am also excited to meet other parents whose children have seizures to discuss similarities and differences and maybe things I can expect in the future? I don't know, I'm just VERY excited about it. I sure wish my sister could come with me because she has the best questions - but my mother-in-law and sister-in-law have agreed to come with me for moral support so I'm excited to have them there too.

That's it for now. As tigger would say TTFN! Ta-Ta For Now!

Have a Great Day All!

This is AbiNormal

An AbiNormal Sleep Pattern

5/6/13 - Today Sheena couldn't tend Abigail because she was busy doing her own life stuff - She told me the week before she wouldn't be able to, but I had completely forgotten until I showed up at her house and she came running out reminding me that she couldn't tend that day! I hadn't  told anyone at work that I wouldn't be there today and couldn't just not show up, so, I brought Abigail to work with me. She was asleep so I knew it wouldn't be a big deal until she woke up, but I didn't figure that to be until 2nd hour anyway. 2nd hour is when I am in the classroom that she would be staying in, and it's a study hall so it wouldn't be interrupting any teachers. I did not, however, expect all the support I got throughout the day from the teachers, aides and students. First hour I dropped her off in this said room where my boss was teaching and explained to him that Sheena couldn't tend but I had forgotten and asked if I could leave her in there with him while I went to science. He did not have a problem with that at all and when 1st hour was over he said she didn't even make a peep. Halfway through second hour she woke up - which was when I was expecting her anyway - so I got her up and fed her. Third hour there was a substitute in English class so I asked the sub the assignments that were needed to be done for the day and brought my students back to the room where Abigail was and got to stay in there with her again - I didn't get to hold her at all though because all the other aides and some students wanted a turn - Abi didn't mind all the attention. 4th hour came and she was still wide awake - fussing a bit because she was tired, but was NOT about to fall asleep. Mrs. Maxwell, another teacher in the school, offered to hold on to her that whole period because it was her prep period. How cool is that? I mean, it's not something I could make an everyday thing, obviously, but the fact that I have a job so flexible and understanding enough to let me bring my fussy baby to school and be completely okay with it? That's pretty cool.

Well, like I said, Abi woke up at around 9:30 or 10am and didn't go back to sleep again until about 1:30 or 2. -- That's 5 hours. She not only just didn't sleep but she was fussy a lot of the time. We could get her calm some of it, but she was just exhausted and fighting sleep so badly. She eventually fell asleep, like I said around 1:30 or 2 and we went for a walk at 2:45pm - she was still asleep - she woke up again at about 3:45pm and didn't go back to sleep again until 10pm that night!! She only took one 2.5 - 3 hour nap ALL DAY.

5/7/13 - Today Abi woke up at 7am - I nursed her, but she didn't go back to sleep like she does sometimes. I had a feeling that she was going to fight sleep all morning for Sheena - I could hear it in her cry that she wasn't gonna be able to sleep, I was right. She stayed up from the time I dropped her off until around 1:30pm when we drove over to Cedar City. Sheena said she hadn't eaten much either - it took her two sittings to eat 4 oz which is normally one feeding for her.  She fell asleep in the car and slept for about an hour. (woke up about 2:30pm and she was furious). I fed her then, and then she was up again for a good while...a little bit more calm than she was before she ate, but something was still bugging her..probably exhaustion. When we were walking around campus she would 'sleep' in the stroller until I stopped walking, then she would wake up and scream again. If I got her out of her car seat she would calm down quite a bit, but still wouldn't sleep...I guess if she's not going to sleep I at least don't want her to be mad about it. So she was up hanging out with me - I just carried her around or held her whenever possible and she seemed to be okay with that. She was chill a lot of the time I was doing errands and what not, so I was okay with that also. She started to get fussy again around 7pm when I fed her one last go and put her back in her car seat to drive home. She slept for about 35 minutes of the 45 minutes left of the drive home then was up again until around 9pm when I nursed her and she fell asleep until about midnight. That's when I gave her her clonazepam, nursed her again and off to sleep she went. So today Abi slept a total of 2 hours all day again and this wasn't even consecutively..but she was a little less fussy today than yesterday.

5/8/13 - Last night Abi woke up twice to eat - one of which I expected (the midnight one that I talked about before) and then again at IDK what time but she didn't fall back asleep after eating. This isn't the first time this has happened. She pulls off like she is done eating and  ready to go back to sleep but then I put her down but she just screams until I get her back nursing again. She did eventually fall back asleep but not until about 7/7:20 this morning..she was still sleeping when I dropped her off at Sheena's house this morning, but then woke up at 9 and didn't go back to sleep. She wasn't screaming when I showed up but Sheena said she has about 30 minutes of a pretty big fit.  I brought her home and since she was calm and had just eaten we just partied for another hour or so. We went to the school for a little bit to visit her dad, then went to the neighbors house to look at some books...after a little bit of time spend there she started to get fussy again so I brought her home to feed her. By the time I started nursing she was SO MAD, she nursed for about 20 minutes then fell asleep - this was around 2;30pm -- she stayed asleep until 6:45 that night! that's a long nap! Makes sense though since she hadn't slept well the night before or all that day. That seems to be a recurring pattern with her where she will take only one nap during the day. Sometimes it is one longer nap, instead of lots of short little ones..abnormal for normal babies, but for us it's AbiNormal. Maybe she just isn't in a growth spurt right now and doesn't need as much sleep? Let's hope so right?
 
   I think I have noticed that on days where she is nursing all day long she can seem to find sleep easier than days that I pump and give it to her in a bottle. I don't know if its the comforting thing, or maybe she eats too fast from a bottle and it hurts her belly or what. But she had had some good sleeping days in the past and then the past two days she has reverted back to her not sleeping well and both of those day I gave her a bottle at one point in the day and at another point she finally fell asleep nursing. So IDK - I just like to have reasons for why she does what she does but I really think she's just AbiNormal and she's gonna do what she wants. There is no consistency with this little girl. What works one time won't work the very next time. Or she'll like something one day and the next day she'll scream bloody murder if you try again. For example swaddling - sometimes it calms her down - sometimes it makes her more angry. Sometimes she'll take her binky- sometimes she won't. Sometimes she likes her green binky - sometimes she likes her white one. Sometimes she'll take her medicine through a bottle nipple, sometimes she won't even pretend to notice the nipple is there. Sometimes she likes to be held to fall asleep, sometimes she likes to be put down to fall asleep. She likes to keep you on your toes at all times. I can handle it, it's like a game, "What's gonna make her happy this time?" haha silly girl. She's a doll.

Anyway, This is AbiNormal. 

An AbiNormal Day

     Everybody has a nervous system and, as we know, that nervous system sends information to the body via signals from the brain. These signals get sent through what is called an "Action Potential". Every cell has a "resting potential" (level that it sits at rest) and a threshold of activity must be hit in order for the signal to continue through that synapse-or connection.
Imagine walking through an automatic door into a store. It is closed and sitting comfortably at it's "resting potential". In order to get through that door you need to first let it know you are there. The door needs input to know that you are there and want to get through.
    That is exactly how the synapse, or connection, in the brain works. The automatic door represents to the cell membrane. On the cell membrane sit two "automatic doors" called gated channels - one it a sodium gated channel, the other a potassium gated channel. The membrane and these channels sit at a the resting potential until the input (Action Potential) reaches it. Once the threshold is met (enough stimulus/input 'knocks on the door') the 1st door opens...the sodium door and sodium rushes into the axon. Once there is enough sodium, that triggers the potassium doors to open and sodium doors to  close. Once the action potential passes through the doors and moves to the next synapse the potassium doors then begin to close.
     Abigail's gene condition mutates the KCNQ2 gene (that doesn't mean anything to me either) but this mutation affects the speed of the potassium door closing. From what I read and understand, this mutation causes the potassium doors to take up to 3x longer to close than normal which effects the time it takes for the cell returning back to it's resting potential-in turn causing an excess amount of electrical activity at all tines in the brain-thus, seizures.

    This mutation apparently has several different strings ranging from mild to severe, the more mild disorder is called "Benign Familial Neonatal Epilepsy (BFNE) and the more severe is called Neonatal Epileptic Encephalopathy (NEE) - the latter is associated with "profound intellectual impairment".  Her neurologist believes Abi to be on the more severe side and will most likely need special education. My gut and my heart tell me that is not the case. She is obviously a little behind now, and she may have slight learning disabilities but I strongly feel her disabilities won't be "profound". We have started early intervention and physical therapy to combat as much as possible, though. There have been times I have thought "maybe she is a little behind" - mostly because she isn't focusing or following anything and not smiling at faces yet...but then someone mentioned possible vision problems and that set a bug in my brain so I looked father into it and a lot of the signs and symptoms of vision problems are prevalent in Abi's behavior, so we will pursuing a vision specialist and I'll talk more about that later when I know more. - But I have good strong feeling that vision is playing more a role in her lack of focus than learning disabilities.

    So now we know the cause of her seizures and that's AWESOME, but as of yet it has not changed anything about her treatment. She is currently taking 3 anti-seizure medications - one of which also acts as a sleep-aid (well it should, I kinda think she's gotten used to it and it's not as effective as it used to be). We give her her meds 2wice a day - once in the morning and once at night - I try to keep it as close to every 12 hours as possible. I am so grateful that Sheena (her babysitter) is so willing to give Abi her morning dose because I don't want to have to give it to her at 5 or 6 am when she wakes up and I don't want to have to wake her up either around 8 (after she has gone back to sleep). I can't tell you enough how perfect Sheena is for Abi and me. We used to have the medicine compounded into a solution so that we could just suck it up into a syringe and give it to her that way. When it was compounded it could be flavored to take some of the misery out of taking medicine. But because her body would chew through her doses so quickly and we had to keep increasing the dose it got to the point where we were giving her her body weight in syrup-y medicine (okay, that is an exaggeration, but it was still an obnoxious amount). So we switched to pills, it is much easier. I just put 2 of her pills into the syringe and crush them - pull up some milk or water (she prefers milk) to dissolve them then give them to her. If we can time medicine with nursing we can sometimes get her to take her medicine through a bottle nipple and that makes it 100x easier for everybody. The third pill is a disintegrating pill that you just lay on her tongue and it dissolves with her saliva or when she nurses. I try to give her this last pill about 30 minutes before I'm ready for her to go to bed, then nurse her, then off we go to sleepy town. She sleeps through the night just fine for the most part - if she's gonna fight sleep it's normally through the day. If she is really struggling one particular day then I have the okay to give her a clonazepam (pill that dissolves and helps induce sleep) in the morning to help make that day a little easier for everyone involved. I don't chose to do that unless she really NEEDS it, but I haven't had to give her a day dose of clonazepam for a long time with the exception of the one time at her babysitter's house a little bit ago.

   So on an AbiNormal day we give her medicine around 9pm - then clonazepam/nurse somewhere around 10:30 or 11pm. She will sleep until 5am - sometimes 6am - when we wake up and nurse again and she pretty much goes right back to sleep. (She has given me until 7 in the past! - she's so good to me). Then we get up around 7:45 (I need to be getting up at 7, but it's so hard to wake up again, and I don't want to be up at 5). So I'll pump at 7:45, then get Abi's things (milk/meds/blankets/etc) ready to take over to Sheena's - grab Abi then off we go. I work from 8-12, then eat lunch with Mr. Petersen (her dad, my husband) at the school, then head out to get Abi around 12:30/12:45 - then we go home. I miss her while I'm at work and worry about her having a good day for Sheena, but I enjoy getting out of the house for a few hours, I seem to be more productive when that happens.

Abi has been having a bunch of really good days lately! She's been sleeping more like a baby should, and fussing a little bit less. Still likes to give us her opinion throughout the day - but she has been able to find peace a little bit more often. She had colic and reflux really badly, but I think she is beginning to grow out of that...thank goodness! Now I think she is just on the verge of teething. I see little tooth buds on the top and bottom that look like they are very close to wanting to come in. And I know it's normal for babies to drool, and she has been drooling A LOT of a long time..but I think teething is just around the corner for us.

up next on our to-do list:
- get in with an ear-nose-throat (ENT) specialist - for her heavy, labored, raspy breathing
- get in with a vision specialist to check out her eyes.
- physical therapy starts May 10 - so excited!


This is AbiNormal