So today at Walmart...

It's always a good story if it starts with "today at walmart" haha. Well, I go to Walmart with Abigail after almost every visit to the doctor or physical therapy..I've figured out this way that Abi likes to be held and it works with pushing the cart too. Try to imagine - I am pushing the cart with both hands while Abigail is draped, face down, over my forearms..arms and head stretched over one and legs over the other. It's quite funny..and so far we have a 2 for 2 record on it working - but today at Walmart a lady saw it and commented on it and then said "she's such a good baby!" I smiled and said "Yeah, she's great." It's true! I have a good baby. :) 

      So in my last post I told you all about Abigail 2.0 - I have been meaning to blog so many times but, like I expected, I'm a slacker. Biggest news since Abigail 2.0 is that Abi had 2 seizures like the one back in May..but none since June 16th. She had one on June 15th and another the next day on the 16th - but, like I said, nothing since then. She has had several really good days despite the hiccups a few weeks back. Her head control is still coming a long great and she's smiling and cooing quite often! She still has moments of sheer anger but I think that's most likely due to the reflux she still is still dealing with.  We still have her on reflux medicine but I'm hoping that with the recent weight gain warrants for an increase in medicines (since medicine doses in babies go by weight) - But YES! Abigail has finally started to gain weight again. Let's see if we can keep this ball rolling! She is over 11lbs again! I swear I remember the scale reading 11.8 but when I asked I was told 11.5 -- either way that's almost 2 lbs heavier! So we will just keep doing what we are doing and hope to keep the progress up! Maybe by the end of the summer we can actually move her up into size 3-6 month clothes! haha 

    We've also been continuing with physical therapy - Last week I got a little disheartened about taking her to physical therapy because it started feeling like the P.T. wasn't really doing much with her - but I went again today and Abigail was more calm and we got a lot more results - so then I realized it's not that the P.T. isn't do much with her as much as she can't do much when Abi is fussy and unresponsive to the therapy. So we will stick with it - today was very promising - such a great session today. I had early intervention come over yesterday for some P.T and that lady seemed to do a lot more stretching then the one in St. George - they all agree that Abigail's arms are a little tight but her overall tone seems to be just fine. With head control still a main goal - our next goal is to try to get her to start reaching out for things. She eats her hands (ALOT) and will even bring them to her mouth (kind of) but hasn't noticed them or anything, but when I was watching the early intervention P.T show me a stretch she inadvertently got Abigail to notice her hands. So the P.T. was showing me stretches that I should do with her fingers and the placement of where Abigail was and where she was doing the stretch was a good spot because I then noticed Abi looking at her hand as the P.T. was opening and closing her fingers - So I thought "I will have to continue doing those stretches in front of her and try to "trick" her into watching her hands!" It's definitely worth a shot! Another shot I started taking is taking Abigail to the pool. Apparently swimming and being in the water can be a miracle cure for a lot of things - my thought it the resistance and buoyancy of the water may help facilitate movement in Abigail's arms and legs. That maybe the water can help her get a better sense of her limbs while making it easier to move them! I have taken her to the pool only once since my hopefulness of this idea and she didn't hate it - she actually didn't really respond at all for the most part - but it was just the very first time and so I would still like to try that. The only reason I don't more often is because it's so dang windy here so often that not only is the wind bothersome to her but then its freezing when you get out of the water! I just can't justify bringing her on days that is too cold for me to get in (even though i'm such a wuss when it comes to even thinking about being cold). But both P.T.'s agree that it could be helpful and don't see any reason why I shouldn't try it..It won't hurt, that's for sure! 

     In my last Abigail 2.0 post I mentioned she's been sleeping through the night really well - that must have been a jinx because even though she is still very capable of sleeping through the night on some occasions she has woken up in the middle of the night more frequently that I would prefer - but what can I do but nurse her and go back to sleep, right? Except, that last few nights she has been waking up in pain and then going back to sleep - So I still really want to get a sleep study on her.. I will talk to Dr. Meier (ENT) about that during our appointment next week. I told my pediatrician about the waking sleep thing and that she is still having blue spells frequently and he ordered a test for low Iron - he says it does sound like breath holding spells and low iron can cause it? or perpetuate it? or something like that. But i'm good to do any test that may give us answers. I mean, lets knock out anything and everything we can, why not? 

     So overall Abigail is still doing GREAT! And today I was told I have a good baby! I've always believed Abigail is a good baby - just dealing with some isms that make her uncomfortable. But it was sure nice to hear from someone who had no idea. Today was a good day with happy news - The P.T was pleased, my pediatrician was pleased, the lady at Walmart was pleased ( :P ) I was pleased. Happy day. She is sleeping now - I wonder how long she will sleep tonight. She didn't get a whole lot of sleep today but that's typically how it goes on days we are traveling to St. George - it seems that no matter what time I schedule the appts. we are always driving during feeding time and the appts. during what should be nap time - so these days are a bit rougher on her by the end - but she's a trooper and makes it through just fine. As for now we will just keep on keeping on and hope this progress continues! I fall more in love with this little baby every single day..it's crazy actually. She's so goofy and quirky! She's so AbiNormal! I love my little goober baby. 

Well, thanks for "listening" - it feels good to talk about it! That's all I can remember for now -- I've really gotta get better at keeping up with this thing..

This is AbiNormal! 

Oh, bugger.

In my last post I forgot to mention some details about the visit to the G.I specialist! Before I get to that I want to tell kind of a neat story. I had a P.T. appointment for Abigail on Monday the 3rd and had her G.I appt the next day - so I decided to just stay over instead of driving home that night to come back the next day. While I was hanging out around town I did some shopping- just because I could - and went to Old Navy. Abigail was having a day for sure, she WOULD NOT let me put her down. She was as happy and content as could be while I was holding her, but the second I put her down there was hell to pay. So while shopping and checking out I just held her to keep the peace. The lady at the register and I started talking and I don't even remember how the topic came up but I mentioned some of her isms, one of them being reflux and the lady begins telling me about some of the tummy troubles her daughter had and how she loved her G.I doctor, Dr. Kaddu and tells me all about how wonderful he is. Ironically, Dr. Kaddu was the same doctor I was to go see the very next day! I thought that was cool. She said his name and I was like, "that's who I am going to see!." Made me even more excited about the appointment tomorrow. Dr. Kaddu was indeed a very nice, genuine doctor. He mentioned sandier syndrome -which is something I asked the epileptologist about months before! I learned, however, that sandier syndrome is NOT a diagnosis, it is just a term that encompasses the manifestations that appear in the syndrome. Similar to epilepsy not being the diagnosis, rather just a term used for someone who has seizures. 

   Speaking of seizures-I am starting to think that Abigail is having seizures more often than we previously believed. I am almost convinced those "eye dances" I spoke of last time are in fact seizures..the only way to be 100% sure in an EEG of course, but I have since been able to get a few videos of it because it is happening more and more frequently. There seems to be a pattern with her seizures. I notice a behavior once or twice, it's not very frequent, then all of a sudden it is happening very often. The breath-holding things were the same way. At first it wasn't very often - I saw it once or twice then all of a sudden it was happening multiple times a day (although I think those are a reaction to reflux pain and are not seizures-but they have become more frequent again-just today she had a big one that resulted in a minor mini seizure). I noticed this eye spasm last week sometime-I'm gonna go with June 3rd as the first time because I'm not sure exactly what day it was-but it wasn't that long ago, and I know it was a few days before the 5th. Haha anyway, I noticed it once or twice and now it seems to happen several, several times a day. Last night Abigail woke up at 1am (she went to bed at 11-so I was very much not expecting it) but she was up and while I was getting set to nurse her, her eyes were going bizzurk! Non-stop, all over the place, very rapid, jerking movements until she got latched and settled down-then they stopped. But some of the videos I have of this phenomenon is occuring while she is calm-so it's not only associated with being riled up. I have yet to pinpoint a pattern or time this most commonly happens..at first I thought it happened when she was calming down, but ive seen some instances of it that prove that wrong. Sometimes there are no patterns to her behaviors, but other times we are able to find them. Such as before, we noticed her seizures mostly happened when she was about to fall asleep or just about to wake up, or after a breath-holding episode. There was one period of time that she would have a seizure every three hours regardless of what she was doing..literally we could look at the time and say "it's almost time" and within minutes she'd have one. 

     We have not seen any big seizures in a long, long while (with the exception of the "peek-through" seizure a few posts ago) but as of yesterday I started noticing a behavior she does very frequently that I wonder if they aren't at least infantile spasms. It is something she has done since I can remember and I haven't thought twice about it before. But yesterday I noticed some things about it that have some characteristics of seizures or spasms. Such as, it is all of a sudden, and it is kind of repetitive. It's hard to explain and so extremely subtle you may think I'm crazy. But when she's just hanging out her arms seem to be very actively moving around. They come up, almost like a startle but not quite, move to the middle, grab at her shirt, or open/close her fingers, all while "sucking" at the air-which resembles lip smacking with an open mouth...her mouth is always open. Haha. Ill try to post some of the videos I got. Again, to an untrained eye her arms may look just like a newborn moving around, and it may be just that! But since it happens so often, the same way every time, and seems to be involuntary I can't help to second guess. Idk. I may just be hypersensitive The eye movements are obviously AbiNormal, but am I over thinking the other subtleties? 

This is Abigail before when I was not holding her :

and this is immediately after when I picked her up: 

Stinker pot. 

This is AbiNormal. :)

Abi 2.0 -

     It has been over a week since Abigail's surgery and she still is continuing to do phenomenally! There are hours on end where she is content instead of hours on end when she is fussy! She has been napping more during the day and has consistently been sleeping through the night (somewhere between 10pm and midnight to - 7/7:30 am - then sometimes I can even get her to fall back asleep until 10/10:30am!) It's been fantastic! She is eating better over all - she takes anywhere from 3-5 ounces per feeding, we are still foritying the milk that I pump and/or the supplements of formula she gets. We are still supplementing because my milk production has become junk! I will pump for 15-20 minutes and get MAYBE 2 -3oz -- 4 oz on a good day. And when she nurses it's extremely frustrating for her because my milkjugs are the opposite of firm and when she goes to latch I like sink in and she can't get latched! It's so frustrating for her to work so hard for such a little return. But! On a good note, the formula we started using is so much easier on her tummy and she has been pooping a lot more - like once or twice a day! She is becoming a relatively normal baby with still a few AbiNormal-isms.
     She is still suffering from SEVERE reflux-we have her on omeprazole -- which is the generic for prilosec -- but we may need to increase her dose...i'm not sure how much it's helping anymore because there were a few days there where she was just miserable all day long, and when she did sleep it was not at all a comfortable sleep, but I will call the doctor on that when he gets back Monday - yesterday and today she seemed to be doing just fine! My neighbor, Emily, mentioned something about day 5 after surgery being a rough day..one of those like old wives tales things? It was days 5 and 6 that were so hard for her. But right now she is on her second nap of the day! And she wasn't even fussy until I put her down, and then not even for long after that!
    I started working at the pool Thurs-Sat 11am-5ish pm and Jaren has been keeping her all day. This is the first time since she was born that he has taken care of her all day, by himself. He seems to be doing a great job dealing with her noises and slobbers. He even changed an explosive poopy diaper today and didn't even complain about it! (I wasn't home, but still!) I'm sure it's a bit easier now that she is more content and happy too, but i'm happy she's not stressing him out all day long. (Although, I wouldn't mind him getting a glimpse of what a day with Abigail was like before the surgery! ;))
    Another ism she has been up to lately are these really weird eye spasm things. I can't even explain them - If any of you are familiar with nystagmus, (quick, involuntary movements of the eye - also have been called "dancing eyes") it is normally a horizontal phenomenon, Abigail's seem to have no pattern or rhythm to them. They spaz all over and are relatively big "jumps". I want to get a video of them, but can never tell when they are going to happen, and when they do happen it doesn't last long enough for me to get my phone to get a good video of it. I have, however, noticed that it happens relatively frequently when she is upset and is about to calm down with either a binky or a bottle. Next time that happens I will try to have my phone ready to go. I don't know if is it a result of a seizure or if it's just a side symptom from her over-active neurological brain impulses. I've mentioned this nystagmus to doctors before and they haven't seemed worried, I guess because she does have a neurological disorder, but they weren't worried about her breathing either and we ended up getting surgery on that! So i'm going to mention it again and push it a little harder, because everywhere that I've read says if we notice it to go see a doctor about it. We've already seen and eye doctor and he didn't see anything that worried him - but maybe I can get a referral to a second opinion...maybe at primary children's!! :)
     But over all we have happy news! She is seeming to be a completely different baby! AND she has been SO much better at hold her head up for longer periods of time! I got her a new jogging stroller that sits her up and lets her look out at the world and I think she likes that! Now we just need to work on the rest of her body to get her to learn she can reach out to grab and kick stuff. But her physical therapist said her overall tone felt so much better than before. I think she will be fine physically once she learns that's what all those things attached to her body are used for. I did notice her looking at her hand for one of the first times ever yesterday! That made me so excited! She wasn't opening or closing her fingers, but she was looking at her hand! That's a start! She had been gnawing on them forever, it's about time she figures out what those tasty snacks are! She also brought her own hand to her mouth yesterday. I don't know if that was on purpose, but it was sure neat!
     I love my little Abigail Kate so stinking much. She amazes me everyday with the tiny little improvements she is making. She coos and smiles WAY more than before - more in this last week I've heard coos and seen smiles than I had in the last 5 months of her life. Although we still have quite a ways to go before we are fully in the clear of her disabilities and isms, the progress she has made is quite spectacular!

This is AbiNormal