One year ago--Kinley's epilepsy

It was about this time 1 year ago that I started having knots in my stomach, and a feeling I couldn't shake for 3 solid days and not being able to figure out why. I remember I was holding Kinley, sitting in our recliner, our only chair at the time since we had just moved into our new house, and talking with my dad. We had carpet layers over re laying carpet in our closet since they had messed up the first time. Kinley woke up from her nap in my arms and did the weirdest thing, which I now know was an aura/ partial complex seizure. I remember watching that, and thinking, "what in the heck just happened?" Even dad said, "hmm...she must just be really tired." It was super odd and I can still to this day remember the knots in my stomach and how off and not right it felt. That was Kinley's very first seizure and also the beginning to a very, scary, awful time in our lives.

I've had a lot of emotions run through me this month just because last year this month started a year of a very scary, emotional, hard year. Loooots of sad and scary memories. The COUNTLESS seizures I had witnessed. Most of them at home because I was too terrified to leave the house, but the ones I did experience outside of my home, sometimes alone, anywhere from at the grocery store, the restaurant, my parents home, the car, hotels, and the hospital. The emotions we went through, the sleepless nights. And when I say sleepless, I mean completely sleepless nights.

I counted it up once since I had tracked every one of Kinley's seizures. I believe she had 44 grand mal seizures in 26 days. Her most reached 8 grand mals and I want to say probably AT LEAST 4 partial complex seizures in a 24 hour time period, and probably well over 100 aura's/ partial complex seizures in about a 2.5 month time span. And, I witnessed every. single. one of them. So realistically, she probably had about 200 seizures in a 2.5 month time span. That's why I say, to me, it is seriously a miracle she is alive and still thriving.

I look back now and wonder why we did or didn't do certain things. I don't know why we never took her to the ER with her first seizure. You talk to any other parent and that's their first instinct. It wasn't mine. I took her to 3 different pediatricians instead. I truly am one that feels everything happens for a reason and I think that there is a reason we took her to 3 different pediatricians instead of the ER. There's a reason we ended up at Primary Children's instead of seeing the only pediatric neurologist here. There's a reason I woke up earlier than her the one day she had her first big seizure. I think everything happened the way it was supposed too.

I had a few different people at the time tell me that I should try to look for the blessings in this trial. At the time, I was kind of annoyed and a little angry because that's not what I wanted to hear. All year long I have come back to asking myself this and still not being able to figure out what blessing came from it. I mean, I already had a soft heart toward people, especially children with medical conditions. I felt like going through the trial of infertility had opened my eyes to things more than anything. I knew doctors, anxiety, I knew how bad things could suck. I could imagine how uncomfortable hospital stays were. How hard it was for families to be separated while one deals with a sick child and the other still has to work to bring in an income. I knew all of this. It wasn't until a conversation I had with Caleb a few days ago that I finally figured out what blessings came from such a hard trial. Me and Caleb both feel that we truly would not be where we are today had we not gone through such a hard trial. And FINALLY figuring out maybe WHY god gave us this trial has given me some relief.

It's been an emotional and hard year for Kinley and both Caleb and I. I never pictured before having kids, that I would have to witness what I have witnessed, that I would have to put my baby through what she has gone through. And that literally hurts my heart having to watch her go through it. I hope and pray more than anything that this is something she can grow out of. That the blood draws, medication and tests can come to an end, that the bad memories and anxiety from witnessing things will at least fade.

I wish I could have enjoyed those months more with Kinley instead of living in complete fear. I often feel robbed of such a special time because babies grow SO so fast and I feel like I missed out on Kinley's 4th, and 5th month of life. She literally just slept and layed there those 2 months. She was so sick. I see other people post about their babies and what they did or are doing at that stage and I do wonder what Kinley would have been like had she not been seizing so much.

I had never relied on the Lord more than during that time. I went off promptings of the spirit, relied heavily on priesthood blessings, and support from our families. It was a testimony strengthening experience.

Overall, Kinley is doing excellent. I cherish my time with her more than anything. Especially because I have seen just how quickly something so good can turn to so bad. I look forward to a happy and bright future with my girl. She makes me genuinely happy, my heart happy, my life exciting and bright. I could not imagine life without her. Me and Caleb are so blessed to have such an amazing and hilarious girl.

We love you Kinley. It's been a year, and we all think this next year fighting this will go much smoother. We love you Kinner bug!

This was the day she had a seizure at the restaurant, then home, then in the car when we headed to Primary Children's. I ended up getting rid of this outfit. It brought back too many bad memories.

Our first stay there.

An occasional grin made us so happy!

The cutest little doll, even hooked up to all the wires.

2nd hospital stay

She was very sick at this time

We did not move from this chair for the entire time. I held her and snuggled her all day and all night.

Doing amazing and so happy with life!

Finally getting help

Normally I wouldn't blog about some super personal trials, but because this one has been SUCH a huge part of my life, I want to document it. And like I've said before, this blog is for me. It's basically my journal. I enjoy looking back and reading everything about my life. The good, the bad, thoughts, feelings, experiences, just all of it.

So, a little back history. I developed stomach issues a little over 5 years ago. It started in hair school. I have dealt with this the entire 5 years and still do to this date. It has honestly impacted my life in a negative way and I have had to learn how to deal with this issue and still live my life the best I can. Shortly after the stomach issues started, I then developed anxiety which has over time increased to SEVERE anxiety and ocd. Because of the two combined, I have had an extremely hard time living my life to the fullest, especially compared to how I used too. There have been SO many experiences with my stomach that were horrible that left me in embarrassment, frustration, tears, anger, and pain. I nearly lost a job over it, I lie my way out of more opportunities I can count, I've lost friends, avoided most situations, didn't accept or take up offers that were given to me, and has left me often feeling like most people just get annoyed with me because I whine a lot, and always make up a reason to get out of any situation, especially if it involves social interaction or food. Because of these trials, I have turned into a home body that simply enjoys being home the most with my family. I used to be one that loved getting out and staying busy, having friends, traveling, exploring, working a lot, all of that. But now, the thought of ALL of those leaves me sick.

I could tell stories alllll day of bad experiences that my stomach has caused, or my anxiety, or even my ocd. But, that blog would be a million pages long. haha.

I finally pushed past the anxiety and saw my doctor. I am starting a couple different medications to hopefully help with the anxiety and ocd. If it doesn't help, or if I still would like, then I will go to therapy for some help. I think it could be very beneficial either way. Then, I will also be seeing a gi doctor for my stomach. I don't want to sound too negative but I'm not planning on really being able to get help for that. Just because every person I know with stomach issues has never been able to truly solve their issues. They may have found a certain diet or certain foods to avoid that may help, but I have yet to hear of any cure for someone that has stomach issues. If I can find that something even helps, then that is a positive, I'm just not planning on it being totally successful. I don't want to get my hopes up.

Anyway, I just kind of want to document this journey and see where it takes me in life. I hope in a positive way. I hope this medication works, I hope my new gi doctor is good, and I hope I can get SOME kind of answers as to why this is going on.

Fingers crossed for a positive future :)

Lab results, Boise, Tattoo'd eyebrows

Kinley's blood work came back and everything still looks good which is good. No dosage change this time which I think is the first time we have not had to adjust it since she was diagnosed with her epilepsy. So, that's all good!

Last weekend, we went to Boise for a quick trip. Caleb had a couple meetings for his work so me and Kinley tagged along. We just hung out at the hotel since it was a quick trip.

Kinley surprisingly did really good for the car ride both there and back. We had elmo and caillou set up on our kindle and it kept her occupied for a while. She took good naps there and back too. The car is the only place she will sleep pretty well for her naps so that is a plus when it comes to traveling. Sleep, snacks, Caillou, what more could someone want? ha

Caleb's meetings went well which is always good. He didn't get back till almost 11 the first night and then was up and at it again that morning.

Since Caleb had to leave that morning, I was still using things from all of our bags which meant it was up to me to check out of the hotel alone. I have done this multiple times before but it was before we had Kinley. I was nervous I was going to really struggle getting our crap down to the car with one hand while holding Kinley in the other. Thankfully, she sat here on the cart the way down to the car and it ended up being a piece of cake. haha She kept going "eeeee!". That's weeeee to us haha

The day after we got back from Boise, I had an appointment to get my eyebrows tattoo'd on. I was seriously SO nervous. I had heard from quite a few people that the pain was really intense, and this also was the VERY FIRST time I had EVER left my Kinley. EVER. I was having a crap ton of anxiety about it even though Caleb was the one staying home with Kinley which I was grateful for. I probably wouldn't have done it if it weren't him tending her. Anyway, Caleb and Kinley did fine, which I knew they would. He even got her to sleep for a nap which was the first time he's ever been able to do that. As far as my eyebrows went, it went good! The pain was so little and was a piece of cake. I am SO happy I did them. I have wanted them done for about 5 years now. I remember a few years back when I was determined to start losing weight, I had made myself a weight loss chart to help me stay on track. At the end up of the chart I made, if I had lost x amount of weight I was going to buy myself a pair of white pants. I remember that I REALLY wanted a pair and that's how I was going to reward myself. I was showing Caleb my chart and he told me I should do a bigger reward so it was more motivating because in the end, I probably would have just bought me the white pants because they weren't that much. I remember thinking, "yeah, he's totally right." So I switched the white pants to tattoo'd eyebrows. And now that I have reached my goal, I FINALLY got my eyebrows done. It was expensive but I also don't feel too bad just because I worked and still work hard to maintain my weight, I don't go get my hair done each month, or my nails, lashes, anything I would love to actually do. I cut and color my hair myself. So, I felt like this is the first thing I have done for myself in a very long long time. 

Here's a before and after. I ended up doing a combination brow which is both soft tap and microblading. I have always been super self conscious of my brows and have often been teased about them. I had no clue what I was doing when I was like, idk, 12 or something and plucked them WAY too thin and then they never grew back. Even before I plucked them, I never ever had a nice set of brows. I had to draw them in every day and it was such a frustrating thing to me. I am so glad I got them tattoo'd on. This is obviously the first session. They're kinda scary right now just because they are still really dark and they're all scabbed up and still in the healing process. I am super excited for the 2nd session here in about a month to make any small changes I want and to perfect the color. I'm gonna have her go slightly closer together and maybe a hair thicker. We'll see once they're completely healed and how they look.