3 for 6

Today is the third day in a row we did not see a seizure in the last 6 days! She had one a day 3 days in a row starting August 20th. The episode on August 20th was while she was getting blood drawn to check her acid levels in her blood-which earlier that day she was on an IV and had already gotten poked, I didn't even think about them just drawing the blood then! I even figured it was going to be needed (the blood drawn later)-I was kicking myself for hours afterward for not thinking of it before! Ugh I was so bugged, I felt so bad! But, here we are, the lab tech stuck the needle and Abi didn't like it one bit, she got really sad, then mad, then held her breath, then had a seizure. This was the first one I had seen since the beginning of July. I got a little nervous (okay, a lot nervous) that it wasn't ever going to end like the one in July-but it did..it only lasted about 2 minutes..but then she was so so sleepy afterwards (which is very normal)-it made for a good ride home (most of the way anyways.) I had to stop once to feed her and twice to change her bum-that girl-but it wasn't awful. 

     The two next seizures happened around the same time of day (on different days). The one on the 21st happened after I put her down in her red chair-she got fussy, but then fell asleep. I was surprised she was sleepy because she hadn't woken up too long before that, but I decided to let her sleep anyway. In her sleep she got a little fussy, which is normal, so I just let her be. Then seemingly all of a sudden she got really mad, held her breath, and into another 2.5 minute seizure. I got that one on video, although, it doesn't look much different than anything we've seen in the past. The next day, August 22, same time (around 11:30am) we were leaving Zion's pharmacy in Kanab after picking up her iron supplement, I put her in her carseat (knowing she wasn't going to like being out down) but I put her down and buckled her in and almost immediately she got mad enough to hold her breath. I quickly took her back out of her carseat hoping to calm her down, but it was too late-into another seizure she went. I tried to take another video, but my storage was full and wouldn't let me. I accidentally took a picture of the episode though, and it is posted at the bottom of this blog. 

    At this time I still wasn't sure if it was the decrease in topomax causing this increase in seizures or they were just fluke seizures caused by poor timing and lack of oxygen-but these breath holding spells aren't new and haven't been producing seizures like these for a long while..so I just wasn't (and am still not) sure. But the iron supplement we picked up is hopeful to alleviate some of those breath holding spells all together. Apparently, low iron (which she was just barely low) can cause these things-so here's to trying! 

      On Friday I was extra careful not to let her get too mad to try to stop the breath holding fits before they began. I do not think they are in her control, I think they are a type of release for her, that she gets worked up and her body just gets overstimulated and uses that as a way to let it out..I also don't think she likes it to happen, and neither do I! So I did my best to keep her the happiest, most content that I could. Friday was also the first full day since starting the iron supplement and she didn't have ANY breath holding spells, at all! She had opportunities for them too! For example, in the car on the way to Panguitch for her dad's baseball tournament (he's one of the coaches). She wasn't loving being in the car-right now she can't be out down AT ALL without a fit. ((I'm pretty sure she's just not feeling well right now-I'll explain later)). She got pretty mad in the car and a few times I thought she was going to hold her breath but they were the normal(ish) pause between screams..which I was okay with. Then the ride home she slept, so that was good-and! She was really good through the whole game too! The doctor said the iron supplant wouldn't work that fast, that it is a build up of sorts, but it was still cool! No breath holding episodes! I think it was a record!

     Then there was yesterday and today-several breath holding spells (at least 3 that had me really worried) but none that resulted in a seizure! Not even the little tiny "spaced out" ones that usually follow. There were 2 today specifically that I remember happening on saturday that I thought for sure was gonna end badly, but thank heavens they didn't! I had to take her over to a friends house to get watched while I was at work and was so nervous the whole time she was gonna be so rotten and end up having a seizure for Bridget, but Bridget said she did beautifully-I was happy about that!

    See, iron constipates babies, and abi has already been seemingly constipated for quite a while, dry sticky stools in small doses. All the while she's had this gnarly rash on and off since we left the hospital Vegas in July (so almost 2 months) I did wonder why it kept coming back, but it wasn't consistent so I just chalked it up to a normal diaper rash. I found out yesterday it's most likely (all signs point to) a yeast infection-this poor girl has had a yeast infection since July and I didn't even know it! How awful is that? It didn't seem to bother her too bad until recently, now it's oh so tender and oh so red and pretty consistent. Poor girl-so she's had 3 seizures in the past week, had been constipated for at least a week and half and has a pretty bad yeast infection. Of course she's gonna be a little needy-this poor thing won't let me put her down for a second before she starts getting fussy and sad. I also think she may be starting to teeth on top of everything else. But! On the bright side, these are all happy normal baby things! Constipation, yeast infection, teething, wanting to be held...they are normal baby things to do, she just adds a little AbiNormal twist to them! Haha and I wouldn't have it any other way.

    I also wanted to add in some more information I left out about the eye appt. Abi also has strabismus-which is when the eye kinda "floats" away to the side, or when the eyes aren't aligned looking at the same thing (which is also part of the syndrome of CVI) but the doc said since she does it with both eyes that's a "good" thing-means she's not favoring one eye over the other..I guess I'll take that.  You can definitely tell when Abigail can see things and when she can't-other than she follows the object if she can see, her whole face just lights up with a giant smile at all things she looks at. It's pretty neat. The early intervention eye lady came over and gave us some toys to play with and things to try-one of which was a maraca rattle and taught us how to ties it into her hand to kinda get her to keep a hold on things and have it make a noise as she moves her hands around..and if she tries to stick it in her mouth is good. Well we didn't even need to tie it on, she held on to that thing for a solid 3/4 minutes and first thing she did with it was stick it in her mouth. I thought that was pretty neat. Also, today, for the first time EVER she held her own bottle. It  didn't appear to be a conscious thing with her, but both of her hands at the same time came up to the bottle and placed perfectly where they needed to be. (Again, I don't think it was a totally conscious thing, but I'll take it!) She placed them there all on her own and I ran with it-I let go of the bottle for a bit and it stayed up! It wasn't a good enough hold to keep a good latch, but I let her hold it as long as she would! I was able to take a few pictures she held it so long! ALSO! The other morning she woke up for her morning feeding and she gets pretty impatient at times (she's a Petersen through and through, they like their food) anyway I put her on her right side with a binky and she calmed down for a minute. I walked into the kitchen to fix her a bottle-took maybe 3 minutes total-she was not calm the whole time, but she wasn't so so mad-but when I came back into the room she was in she was COMPELTELY TURNED OVER ONTO HER BELLY! All by herself she rolled completely over! I thought that was the coolest thing! Her form was perfect too! Arms up in front and knees tucked, it was way too cool.I wish I took a picture! But when I came back in and saw that i cheered her on and she was half smiling with me and half telling me firmly that she was hungry. But I'm counting it as her first roll over! August 21st 2013-Abi rolled completely over to her belly. :)

Okay-last thought, then I'll let you go. I've decided "raising epilepsy" isn't the most accurate portrayal of this blog. Mostly because every case of epilepsy is so different from one another even with the same diagnosis. Like Dr. Sweeney said "the only absolute with epilepsy is that there are no absolutes". Since this blog is specific to my daughter's life with epilepsy I've decided to change the URL of my blog from raisingepilepsy to abigailsepilepsy. I just find it a ton more accurate to our case, as I am not raising epilepsy, I am raising a daughter who has epilepsy. I don't think it will make tooth of a difference to many of you, as most of you just click the link I post, but in case you did notice, that is why I decided the change. 

Thanks for reading! 

This is AbiNormal!

Abi holding her own bottle!

What's up Abi? "Oh nothing, I'm just chillin"

For those of you curious-this is a picture of what Abigail looks like throughout most of her seizures. I debated putting this one up here, but I figured it may help someone somewhere..and interest others. This particular picture was taken during the 3rd seizure-the last one we've seen for 2 days now!

Quite the weekend!

Here is a recap of the weekends past events and doctors appointments - which Abigail did wonderfully through. 

We arrived in Salt Lake Thursday afternoon on 8/15/13 and went straight up to Layton where my dad had just flown in for a mission. We got to visit with my dad for a little bit before we all 3 went to my cousin Allie and her now husband David's wedding reception. It was beautiful and Allie looked stunning (as always). It was so good to see family that I had not seen in ages and be able to show off my little Abigail who made a wonderful name for herself, She was happy and cooing and loving the attention. :) Abi even ate her body weight in chips and salsa - oh, wait, no...that was me. ;) It was very cool though to be able to put a real face to the baby that had been "known" on facebook and all that. We all went back up and stayed in Layton for the night. My dad had to leave early in the morning but Abi and I got to sleep in and rest before our busy weekend. 

So now here we are on Friday 8/16/13 and we have an eye appt at 1:00pm at the Primary Children's in riverton with Doctor Marielle Young..she was one of the names given by some parents on Utah Kids that deals with CVI so I was excited to see her. She essentially just confirmed that it appears Abigail does have CVI (coritcal vision impairment) where her vision is just fine, but her brain isn't always registering what she's looking at - so she may not always be seeing things. She did also say that Abigail is still a little farsighted, but nothing she would worry about or give glasses to. She said it was a +2 - not quite sure what that means exactly, just that it's there, but not bad. Dr. Young said that the shape of babies eyes are still evolving for a while and it could correct itself. CVI is also something that is supposed to improve with age. We are not sure the severity of her CVI, but that is not something we will be able to know until she gets older, and essentially, is able to tell us what she can and cannot see. The best thing for her right now is to keep up with therapy and all that, which we are doing through Early Intervention. Oh, one more thing that we are unsure of is her dang nystagmus - Dr. Nelson (Neuro) is sure that it is not a seizure, and I 100% agree, but Dr. Young (eyes) said it wasn't affecting her vision or affected by her vision - so I'm not sure why it's happening other than it is part of the CVI syndrome. But Dr. Nelson said something funny (he didn't realize it was funny) but he said, talking about her nystagmus, that it's kind of "abnormal for regular nystagmus situations". It's funny because it is truly AbiNormal. She has it, its not a problem, it's not affecting anything, but it's not completely the same as has been seen in the past. haha

We had Saturday and Sunday to relax before the storm of appointments. Saturday we did just that, relaxed, took a few naps, had a very laid back day. Then Sunday I went and spent the day with Abigail's Grandpa Petersen. Went to church with them, then Abi took a long Sunday nap while we visited and ate dinner, then that night there neighborhood had whats called a "walk-about" where 3 or 4 neighbors 'host' the walk about and the rest of the neighborhood walks from house to house and visits with the rest of the neighbors while enjoying snacks and drinks the 'hosts' offer. It was actually quite fun and something I think the ladies here in the valley would really enjoy! 

Sunday brings us to Monday. Monday 8/19/13 we had a Cardio appointment at 8 in the morning in Riverton with Dr. Mennon and a neurology appointment at 3 pm in Provo. The cardio appointment was to check up on that heart murmur the doctor in Vegas so gently told me she had. The doctor here said he did hear a heart murmur along with a valve click and we would need to get an echo-cardiogram on her tomorrow morning..but since she wouldn't sit still well enough for the ecg, it would have to be a sedated procedure. So we got that scheduled for the next day at 8:45 in salt lake - I was supposed to have an 8:30 appt with nephrology at Salt Lake, so I rescheduled that for 11am and all was well. The ecg showed nothing abnormal and the valve click is apparently a relatively common noise. So we can forget about her heart! Yay, I was hating the idea of something else to have to worry about. (The nephrologist we saw also said that only about 2 out of 100 heart murmurs every end up being anything serious)

After the cardio appointment in the morning (the first one, on monday) we went over and visited Jaclyn and Dash. Boy, is that one handsome little man. He has teeth and everything! I think Abigail has started teething, there are times she just gets fussy for seemingly no reason, and has enjoyed biting on my fingers at times. No signs of teeth yet though. Like, no red gums or anything like that. But she's at that age, so I'll just keep my eyes out and keep you guys posted! But it was crazy to see the difference between Dash and Abi and the toll this disorder really has taken on her. It used to really bother me to see babies her age doing and progressing as they should be, but now it really doesn't. We have seen such progress in Abigail that that's really all I can ask for and she'll get it when the time is right..but it is still very cool to me to see other babies learning and all that. Like, things I have to look forward to while getting to enjoy the newborn stage even longer! 

We went out to eat at sweet tomatoes with the White/Stephenson family (Abigail was a delight the whole time we were there) then Abi and I left from there and went straight to her Neurology appt. Abi finally got some sleep on the way to the appt, but it was cut short when I took her out of the car. I was so excited to have the neurologist see this thing that Abigail does as she wakes up that I've been trying to tell him about but have never been able to get a video of it..but she woke up and he still didn't get to see it. Also, because she was SOO tired she was NOT having being there, AT ALL. She screamed through the whole appointment, but wonderful Dr. Nelson is so patient and we worked through it anyway. We decided it definitely is her topomax causing the RTA and we will start weening her off of that slowly -It will take about 20-30 days to get her off of it completely. We are hoping that the keppra and clonazepam will continue to work up to par and we won't need to substitute the topomax for another medicine..he said it's unlikely, but we are gonna wait it out and see. What that essentially means is that we are waiting to see if she has any seizures within the next few weeks. oh, bugger. The dose we had her on that was working was 12.5mg in the morning and 25mg at night..now we have her on 12.5mg 2x daily for 10 days, then we will go to 12.5mg one time daily for about 10 days, then we will be off the topomax with high hopes of not seeing any seizures. We will keep her on the bicitra (which is the medicine for RTA) until she is off the topomax completely. 

The next morning - Tuesday 8/20/13 - we had her sedated echo at 8:45, which I already told you the results. But the Nurse practitioner told me is was going to be about a 45 minute procedure and then about an hour in recovery which would put me 30 minutes late to my nephro appt. I called them to let them know and they said that is fine. So they sedated her, I went out to my car to grab my laptop to get stuff done during the procedure and stopped by the cafeteria for some breakfast..total of 15 minutes tops..I was sitting outside cardio with the intent to make a call before I went back in when they called me and told me she was done and they were ready to head up to cardio. I MISSED THE WHOLE THING! I was so bummed, because if you know anything about me, you know I LOVE to watch these things happen and I LOVE to be able to see what is inside my baby and just the body in general. I think it is so cool what they can do these days..but I missed it, the whole thing..So I did was any reasonably normal parent would do and asked for a copy of the echo...haha (see, that's funny, cuz it was not normal for me to ask that...they were actually a bit confused as to why I wanted it). Anyway, I have not yet looked at it, but I now have a CD with pictures of my baby's heart on it - how many of YOU can say that??? ;) Well anyway, we went to recovery where she did just fine, and ate 5 oz of formula then got discharged. After going back to cardio to hear the results that her heart was fine we then left and went straight to her nephrology appt..we ended up only be 5 minutes late to that!

Nothing really exciting happened at the nephro appt, we just essentially made the plans for what to do with the bicitra while weening off of the topomax. He also agreed that is was definitely the topomax causing the RTA because her acid numbers earlier this year were just fine and the topomax is a progressive thing. He also said that there shouldn't be any repercussions of the extended use of topomax, that after she comes off of that her numbers should return back to normal..we will get a blood test about 2 weeks after the last dose of topomax just to be sure. I did learn, however, that this nephrologist told me he did is residency at UMC..which, if you remember, is the hospital that treated me with such hospitality in Vegas that we just loved so much (intense sarcasm there) but I didn't hold that against him and he felt bad that I had such an awful time there. He also agreed with me that the doc didn't seem to be the keenest pediatrician he's ever heard about. When I told him they dosed me at 11.32mL of bicitra he responded "are you sure he was a pediatrician?" (he was joking, but it was still nice to hear that I really wasn't being silly or overreacting) So Dr. Grinsell (the nephrologist) took the dose down to 7mL twice a day, instead of 11mL 3x a day. That is so relieving! Now I can give all her meds at the same time every day and not have to worry about remembering a random dose in the middle of the day. 

That is it for this post - i'll let you digest this one for now because I do have more information to add into another one later today. I figure this one is long enough for now. Enjoy.

This is AbiNormal

So happy at the cardio appt!

No news is good news!

So I realize it's been almost a month since my last post! I was so worried about this happening from the beginning, you know, me getting lazy and all. It's just hard when nothing big or new happens for me to sit down and write about how today Abi was like a normal baby-which I guess is big news in Abi's book. But seriously, the last month since that atrocious hospital experience in Vegas at UMC (it has been almost a month and I'm still harboring negative, anxiety-packed feelings about that place and the doctor-- I'm not one to normally dwell) has been fantastic overall. She has just been so much fun! Smiling and talking like its her job! I'm thinking she's gonna be a chatterbox like her mamma-lucky girl. Haha she's been sleeping through the night consistently-11 to 6:30/7 -takes her meds like a champ - is eating almost 5/6 ounces at each feeding and growing, finally! We've even officially moved her up into size 2 diapers! We still have her in 0-3 size clothes but there are signs of them getting almost too tight! I haven't gotten her weighed or anything since Vegas because I haven't yet made it to the pediatrician (I thought I had an appt with them on the 29th, but I showed up and they didn't have me scheduled - so I go back this Tuesday the 6th). We did get to see her physical therapist last week though and she was SO pleased with Abigail's progress from the last time she saw her..her head control has come a long way - still a bit to go but a long way none the less. She still spazzes a little when she's falling asleep (I only throw that in now because she is laying right next to me as I write this and I just saw her little arms jump up in the air..I just love her to pieces). She also still has those pesky breath holding fits often too-some resulting in minor seizures-they've become relatively frequent (more frequent than I'd like for sure) but I've pinpointed them to being at their worst when she really tired..her nystagmus seems to be worst then too. 

     Anyway, last time I saw her neurologist we were able to get her in for an EEG to check for neonatal spasms, which, if she does have them then we would put her on a short term steroid treatment to combat those. (But may give her roid rage while on it) I haven't gotten the results from the EEG yet, but I go back to see him on the 20th of this month so we'll get some answers then. Also that same week(ish) we will try to get her in to see the cardiologist for a potential heart murmur, the nephrologist for her RTA (renal tube acidosis), and HOPEFULLY another eye doctor. Her nystagmus is so so constant now and we just had a visit from Early Intervention eye specialty who mentioned CVI (cortical vision impairment) -which is not a vision problem with the eyes, but a vision problem with the brain. It is a neurological condition that impairs vision-the eyes see it, but the brain doesn't process it. It is very common with epilepsy..nystagmus is one of (the many) signs of potential CVI. The E.I. Eyes lady (Jennifer) in no way diagnosed CVI, just mentioned it as a probability (not possibility:probability). I've wanted to go back to the eye doctor ever since the first one-but I was going to be patient-but since she mentioned that, and my insurance starts over at the end of this month, it gives me great reason to push for a second opinion! 

   I'm going to try to keep up with this blog update thing better-but just remember-with AbiNormal-no news is good news! But I will definitely update after all the doctors visits with the information from them! 

   Oh! Abi has gone swimming a lot since we've been back from the east! She loves it! I kick her little legs for her and she just smiles and smiles and coos. She's also noticing faces much better and LOVES to look at herself in the mirror..she truly is such a happy baby-I've known it the whole time. I've always said "I can tell she wants to be happy-she just can't be right now!" But now she is. Happy and content (most of the time) and OH SO FUN! 

This is AbiNormal!

So happy!

Loves to swim!

Mommy's girl