5 months, blood work, weight loss

Monday, Kinley turned 5 months old!

At 5 months, Kinley...

*Weighs 14 lbs 11 oz, chunking right up and I love it!

*Wears size 2 diapers

*3-6 month clothes

*The spittiest, drooliest baby

*LOVES her dad and will smile at him whenever he looks at her. She doesn't like it when he holds her though.

*Loves the tubby

*Officially diagnosed with Epilepsy

*Very content

*Still a huge mama's girl

*Currently sleeping about 7 hour stretches at night. That's thanks to one of her medications that knocks her out at night.

*Loves to grab and suck on her toes.

*Smiles, coos allll day long, and giggles a lot, especially when I get her ribs, neck and armpits. 

In the past week, I feel like she has changed SO much compared to what she was like. We all feel like we missed out on her 4th month of life due to her seizures so it's such an awesome feeling seeing her grow and be so happy again. 

Such a beautiful little thing.

Here's some pictures of her over the past while. Sorry for the overload of mom and baby selfies. haha

We finally got her a bouncer. A much needed gift after being so brave at the hospital. She loves it!

Swinging on our swing set, 

Life with Kinley has seriously brought us so much joy. I LOVE waking up to her every morning. I love my days at home spent with her watching her learn and grow. She's so much fun!

Tuesday was another rough day. I had to take Kinley to her pediatrician. It was a follow up for all of her seizures and to go over everything from Primary's. After that, I had to then go up to the hospital to get her some more blood work done. They have to check her blood every so often to check the medication levels in her system. I'm tired of hospitals. I'm tired of watching my baby be poked. I waited a stinkin hour before they even got me to the lab. Then another 20 min wait while in there. Because she is so little and you don't typically see babies get blood work done, it's not practiced a whole ton. So sitting there holding Kinley down while they poke multiple times trying to get blood honestly makes me sick. It's brutal. For adults you hear about blood draws all the time and it's usually pretty simple, but for a baby just barely 5 months old, it's hard to watch. They're veins are so so tiny and usually under a lot of pudge. And they all have said, "even though she's a baby with small veins, she has like REALLY small veins." Takes after her mom. I've heard that phrase nearly every single time I've had to get blood work or an iv. So, after that was all done, Caleb wanted to see her and cheer her up at work. So we went and visited him there and she loved seeing him. Poor sweet babe. She has to get more blood work again at her follow up in Salt Lake here in a week and a half. I don't know how often after that. Hopefully none. 

All happy before we went in.

Another weight loss post. 

Officially down 51 pounds pre pregnancy. WOO! That was a couple weeks ago too. In case you didn't know, but it is expensive to buy a whole new wardrobe! Everything from underwear to coats. I am wearing the same like 3 shirts and my one pair of pants that fit. Yesterday I finally had some luck and found some jeans and I jumped on a sale online and ordered me some shirts. So, hopefully now, I can actually have a few outfits to wear! The rest will slowly just have to come. 

E.R. visit

We had another ER visit. But this time, it wasn't for Kinley, it was for Caleb. Caleb went to work on Friday and originally had to work a double that day which is about a 14+ hour shift. He got there and started to not feel good. He said he felt like he had the flu. He ended up throwing up at work. NO one was able to cover his shift so he was stuck there miserable. Finally when it slowed down some, he went over to his parents across the street and was able to lay down and sleep for a while and was just kind of on call if it got crazy busy. He ended up throwing up 3 more times at his parents house. During, he started getting a migraine. He took some exedrin but it did nothing. His head was killing him. Long story short, he was finally able to get off and was home about 5:30. We didn't know if he had the flu or if he had just had so much stress that his body was just done. I made his request, grilled cheese and tomato soup and he went to lay down in hopes he could sleep off his migraine. It was getting worse and worse. That night when I went to get me and Kinley ready for bed, he had woken up and could barely talk. Light, sound, movement, anything made him just miserable. He's had migraines in the past but they typically will go away after he takes his exedrin or he can usually sleep them off or they'll eventually taper off. He wasn't able to take any more medicine. We tried every at home ways to get rid of it and nothing. I've never seen him so miserable before. Caleb is one that if he is sick, doesn't feel well, uncomfortable, anything, he won't say. So I knew it was bad this go around. He was still throwing up from his migraine and wasn't able to keep liquids down which in turn makes him even more dehydrated and makes the migraine worse. He wanted to sleep in the bathroom since the toilet was right there and he was in and out of the tub. I told him I would take him in just so that he could get some relief but he opted out. There wasn't much more we could do other than go to sleep and hope that he could sleep it off. Well, just ahead of 6 that morning I woke up. I saw my bedroom door open and Caleb literally was slowly crawling to me. I got up, grabbed  him, and I just knew he was absolutely miserable and that I needed to take him in. He's never been taken in to the ER before for his migraines, but this one was just horrible. I told him to just lay there, I'd get everything ready and I'd take him in. I hurried and ate a little breakfast while I was running around grabbing everything we needed to to go. I dressed Caleb, put his socks and slippers on, changed Kinley, grabbed our stuff, Kinley, and walked Caleb to the car. He couldn't even support himself. I was like holding him getting him to the car. I knew it was bad. I took him to the E.R. at EIRMC. They got him in and started an IV. He threw up there too. Poor guy! I felt so bad. The trip was worth it. They pumped him with a couple different nausea meds, a muscle relaxer, iv fluids, and some concoction for his migraine.

I just sat on the chair there and held Kinley the whole time. She of course MAJOR spit up all over her and me, but more so me. She never does that at home. I wiped up what I could and figured, hey, at least I have yet to shower today. What do ya do. Anyway, after they got all the meds in, we were good to go. He felt so much better when we left. Still not super great because he obviously had been throwing up so much. But, he could actually open his eyes, and walk which was great. When we got home, I made him breakfast while he showered, then he went to sleep and rested while I cleaned, washed, did 4 loads of laundry, and disinfected the entire house. Puke makes me feel so germy. Blah. Later, his mom and sister stopped by to drop off some food and to check on Caleb. I hate seeing my boy in pain! It's not fun! He was the most miserable I have ever seen him. Pretty sure we are pro's at this whole hospital thing at this point. And if we now could avoid hospitals, that would be super! Hopefully, life is less stressful, and things can all chill out so we can move on. Today, Caleb is doing much better and I am happy to see my husband back to himself. I love his guts! When things like this happen, it makes me grateful for the health we do have. Tomorrow is Monday which means it's a new week and I am determined to make it a good fresh start! 

Primary Children's Hospital round 2

Since we came home from Primary's last go around, Kinley's seizures became way way worse than before. Before, she was having 1 every 4 days or so, and randomly had 3 in one day which led us to our first trip to the hospital. She was having like 6-8 seizures every day for 6+ days in a row. All through this time, I was a mom that was trying to stay strong for my baby, but inside, I was a scared hot mess. I cried a lot. I couldn't sleep, I didn't have an appetite, I felt sick from the worry and stress, and my heart was just seriously breaking from what I was witnessing day in and day out. I couldn't go anywhere, and all I wanted was either Caleb or my mom, and for these seizures to just stop. I was on the phone back and forth with the nurse from Primary's all throughout the week. We were told to double her dose, so we did, and there still was no change. I was getting frustrated because this particular nurse I felt like wasn't taking me serious and kept saying things like, "if they're seizures, if they're seizures, if they're seizures" or "an EEG will only CONFIRM that they're seizures IF that's what they are", or "it may not be seizures, babies can do weird things that can make parents assume", or "you just need to give it time to let the medication kick in. I'm sure that's what the doctor will say too." Stuff like that. I kept interrupting her and was kind of getting mad. Like, yeah, I am totally making up that my kid is having seizures. I KNOW that this isn't just a weird thing that babies do. I have over 30 videos on just my phone of these seizures and plenty on Caleb's phone too. Even though they never caught a seizure on the EEG last go around, the Neurologist was confident that that's what they were. Yes, obviously, they cannot CONFIRM that's EXACTLY what they are until it's been caught on the EEG, but what was frustrating was that she wasn't taking me serious. We HAVE waited for this medication to kick in and they are only getting worse and I am not just going to sit here and have my baby seizing countless times a day and have day after day be awful for her. She couldn't function. She was 100% wiped. Her eyes were heavy, she would just lay there and not move. She wasn't cooing, blowing bubbles like she normally would, she would sleep every second she could, she wouldn't let me put her down, nor did I want too, just things like that. It was no quality of life. She wasn't able to learn, and grow, and every day counts. We had been at this a month and I was seeing a decrease in her development and I know it was because of the seizures. I was the annoying mom calling multiple times a day, just to find out every time that she "hadn't talked to the Neurologist yet" and then it would be after 5 and the office was closed so I'd be out another day. 

On Sunday, we had a huge family fast for Kinley. It was a new experience for a lot of us because I'll be honest, I never fast and a lot of us don't really do it. I didn't really know all the rules and what not until my dad told me. We had family that chose to fast for the first time for our sweet girl. It meant a lot to us. Earlier in the day, my mom and dad came by so that my dad and Caleb could give Kinley another blessing. I love blessings. I seriously cry through them every time. Listening to them always gives me reassurance, a re charged feeling, and hope. They also just make me very grateful for the men in my life and that they hold the priesthood so that they can give them. Later that night, my mom invited us over for dinner to break the fast. I was hesitant because I knew Kinley would seize while there and I didn't want to stir up anything or cause a scene with all of my family there. We did end up going. It was nice to get out of the house even for a short 7 minute drive to my parents. My whole family was all so supportive. During our dinner, Kinley was currently sleeping in my arms and I knew that when she woke up, she would seize. Just as dinner was almost done, she started to wake up and I knew it was about to happen. Both Caleb and I quietly moved to the living room where no one was so we could take care of the situation. She began to seize and for me and Caleb, we did what we normally do. My family surrounds us and also watched her seize. Helpless, you just sit there and wait till it's over. It was kind of hard seeing my family see her because you could tell it wasn't easy for them either. She had 2 while we were at my parents house that night. Everyone just had a lot of sympathy for her. 

Day 1. Monday, I called the nurse again. Just like earlier in the week, I wasn't getting anywhere. I took it upon myself once again. I ended up calling the on call neurologist at like 6 on Monday night because I once again, didn't get a call back from this nurse. They said to only call the on call doctor with emergencies, but my vote was, that this WAS an emergency and because I wasn't getting the help elsewhere, I ended up calling. This doctor I had not ever talked to, was more than awesome. I told him what was going on, what this nurse was telling me, and we both disagreed with the nurse and agreed with each others plans. He wanted us down there for another EEG that next morning at the hospital at 8 a.m. so that we could hopefully capture these seizures on the EEG because it can tell them a lot more about these seizures. I was so happy because that's also what I wanted done. That's why we were down there for 4 days the last time and it never ended up happening. Now that she was having multiple seizures a day, I felt confident that they could capture some. So, because of the plan, we were packing up and headed out that night again. Ugh. Another LATE start to this whole deal. After getting a quick dinner, us packed, gassed up and on the road, it was 8:30 p.m. We were just headed to a hotel there in Salt Lake. Because Kinley was having so many seizures and because it's so crucial to have her rolled to her side while seizing, we had to pull off the road twice because of her waking up and about to seize. Both times, she never went into her full blown seizures. She always does this weird thing prior too them that we later learned are seizure related. But, seriously? What the heck? She had seized EVERY. SINGLE. TIME. when she wakes up, why not now that we were on our way down again? Anyway, One of those stops, I had to give her her medication anyway, so that stop was worth it. The rest of the drive was a nightmare. We had to stop 5 total times because Kinley was either about to seize, needed fed ( she still eats every 1.5 hours. Yes, I feel like a milk cow.), or because she was SCREAMING. It was such a long drive. It was late, I haven't slept in weeks, I was SO tired, and we just wanted to be there already. 

Day 2. We FINALLY got to our hotel around 1 a.m. By the time we got up to our room and kind of settled in and to bed, it was about 1:30 a.m. My alarm was set for 6 but I couldn't sleep great and was up prior to 6. Super. I was running on about 4 hours of interrupted sleep. Oh, and I was STARVING. Like, feed me now or I'm going to puke starving. That's partly why I couldn't sleep. My snacks were not holding me over. We hurried and got ready. Kinley woke up that morning and I was waiting for a seizure. She DIDN'T have one! Oh my gosh, if she wasn't going to have one on this EEG I was going to be mad. What the heck? Anyway, it was an expensive 6 hour stay, but we were packed back up and headed up to Primary's early that morning. We got there and after checking in and what not, they took us to our room we would be staying at. It was better than the last room we stayed in and I was super happy about that. It was a private room, we had our own bathroom (still no shower), a window, and a couch that folded into a bed where we both could at least squish onto to sleep that night. They got things rolling really fast. 

I knew Kinley was tired so I was hoping the EEG would be hooked up VERY soon so that if she fell asleep, that if she seized when she woke up, they'd catch it. That's the whole reason we were down there this time. They did come in like 10 min later and got her all hooked up. They also have a camera that you have to keep on her so that if she seizes, they can see what her body does. She once again hated it, but it had to be done. Now that she was hooked up, I was relieved. K baby, you seize away now. I wanted them to confirm they were seizures, and also get some answers. 

About a half hour goes by and she begins to wake up. I tell Caleb to turn the camera on her while I put her in the crib there so they could get a good view of her seizures. I lay her down, Caleb gets the camera turned on her, and she begins to seize. I push the button for the nurse to come in, and also the button I was supposed to push on the EEG so they knew. The nurse came in within like 30 seconds and was happy they witnessed her seizing. All of a sudden, like 4 other people are in watching her seize. A couple doctors, and a couple more nurses. Her brain activity on the EEG was going nuts. They kept asking how long it had been and if they have IV access. Just over 2 min and she stops. Me and Caleb both were SO relieved knowing that they had at least caught one on the EEG. It's also less scary witnessing them in a hospital vs home. If something were to go wrong, we had the help right there. We were told they want IV access and that the neuro team would look over it and be up to talk to us. Because Kinley's seizures now wipe her out, after she seized, she fell back asleep. 20 minutes later, she begins to wake up. We do the same routine we had just done. I move her to the crib, Caleb moves the camera, and I push both buttons. She again seized. After it was over, I was even that much more happy that they now had 2 to go off of. Shortly after her seizure, IV team came in. I was DREADING this part. I know how much I hate needles and especially IV's. I would take every poke if I could. Both me, Caleb, and another guy had to basically hold her down while she screamed and got her IV. I watched and they tried in her hand. They poke it in, not get it, slide it out some, go back in, not get it, slide back out, go back in, and they couldn't get it. So they took that out and tried in her foot. I seriously like wanted to cry. Not fun to watch. They did get it in her foot. Thank goodness! They took some blood. Guh, poor thing. I picked her up, and just held her. She finally calmed down and fell asleep. Neurology team came in to talk to us about the EEG and further plans. 

A little side note, since she had so many wires, I was stuck in that chair the whole time or I could put her in the crib. I couldn't lay down next to her or anything which stunk because I was tired, but didn't want to put her down.

EEG DEFINITELY confirmed that they ARE seizures. It shows where it starts in the brain and how fast it takes over the rest of the brain. They wanted her on another medication immediately. They knew more of what medication to put her on too just from the EEG. They came and gave that to her through her IV. They said it would make her VERY sleepy. And it did just that. She was OUT. Like that heavy dead weight type of sleep. They said if she didn't wake up to eat, that they would do IV fluids and also a feeding tube and that I could just pump and still give her breastmilk through the tube. That made me way sad. I didn't want to do either. If any of you breastfeed, you know just how hard it can be to either wean or not do it because you aren't able too. It's that bonding hormone and for us, it is strong. I've exclusively breastfed since the day she was born. I didn't want to give it up, not even for a day. I wanted to cry. I didn't want to have to feed her that way. They wanted to do some more tests just to rule out anything else. Blood work, urine sample, and possibly a lumbar puncture. I was sad for my baby. I didn't want her to have a lumbar puncture done. I just wanted her healthy and to take her home so they could stop poking her and doing vitals all dang day. For the rest of the day, we were there to just wait, continue watching her EEG activity, and hope that she would wake up to eat. 

After a couple hours, I stirred her enough to see if she would eat. She did! That was a huge relief for me. I continued to stir her throughout the day every couple hours so she would eat and hopefully continue to make wet diapers to prove it. The rest of the day went ok. We basically just hung out while they monitored her EEG. We tried to go to sleep early because we all know that hospitals start the day at like 4 am. 

Day 3. Through the night, they were able to put a bag in her diaper to collect urine for the tests they wanted to run from that. The night was ok. We both stirred a lot because Caleb's feet were at my head, and my feet were at his head. It was the only way we would fit on the bed. Then, phlebotomy came in at 5:30 that morning for blood work. Once again so sad! They couldn't take blood from the IV so it was again another poke. Not a fun way to wake up. After that, the nurse came in for more vitals. I was able to get her back to sleep. I decided to just hurry and get ready because I knew if I didn't then, that it probably wouldn't happen. I just washed my hair in the sink in our bathroom and kinda cleaned up there rather than wait for a shower because they both were full. The nurse told me that that was all the testing she knew of that needed done. When the neurology team came in that morning, I asked if they were going to do the lumbar puncture. They told me because of her EEG, that they didn't feel it wasn't a necessary test anymore. I was so happy to hear that. From the EEG, they were able to see that she definitely has general complex seizures. From the looks of things, it was very possible that she could outgrow them by the age of 3 ish. Not for sure, but it's possible. Her brain at this stage of life is still developing and has yet to develop a cover thing over a certain part of her brain which is causing it to miss fire every time she wakes up which then causes the seizures. The medication they put her on calms the brain so that's why she is so sleepy. All in all, this is good news! We were happy to now have at least an idea of what is going on and not be left completely in the dark. 

Since the dose of medication in her IV, she hadn't had another seizure. She wakes up and is just normal! And that nearly makes me cry happy tears. Since she was seizure free for 24 hours and eating well, they were going to discharge us. They could remove the EEG. 

I was able to give her a sponge bath over a little bucket of water to get the EEG goop out of her hair. Later right before they discharged us, they took her IV out. She was finally free of all cords and things on her. They brought in the paperwork and Caleb picked up the prescriptions. We finally were discharged. That process alone takes forever I swear. 

We left the hospital about 2:40 that day and got home at 6. We didn't have to stop once! Kinley was an angel the whole time. Took two naps, and was just content otherwise. It felt so good to be home again. This time we both felt much better about the outcome. We are hoping to stay seizure free! 1 day and going strong! We are continuing both medications for now. It is kind of a hassle. One medication is in pill form, so I have to crush it and dissolve it in whatever. I now pump just enough milk for that and give it to her through a syringe. That's once a day. The other medication is still twice a day. We go for more blood work in a week, and then again at her checkup in 3 weeks. They have to monitor the medication in her blood because apparently it's pretty strong. 

Last night was the first night I actually slept. Because Kinley's medication knocks her out, I didn't wake up to her constantly stirring. In fact, I don't think she moved all night. I woke HER up at 6:30 to eat this morning, then she went right back to sleep till 9. Pretty sure I could sleep for weeks but I will take last nights sleep any day. It was great. 

Here's to hopefully getting our lives back together. A hopeful future. A bright future. A seizure free future! 

 

Epilepsy continued...

Another post of my raw emotions about life lately. Something about blogging my life, both good and bad is very therapeutic to me. I feel like I have vented it out, gotten everything off my chest. It's my honest thoughts and emotions of life. So, here we go.

When we got home from the hospital, it was almost as if we felt like life was sort of back to normal. A breath of fresh air. We knew we weren't completely out of the woods with Kinley's epilepsy, but we were hopeful that her medication would put these seizures in the past--and for good. We spent the rest of the weekend trying to catch up for the 4 days we were gone.

Sunday afternoon rolls around and I was holding Kinley while she was sleeping. When she woke up, I knew what was going to happen. I can usually tell just by her actions, and the look in her eyes. You guessed it. She had another seizure, once again in my arms. I yell to Caleb and told him she had seized again. It's a tough pill to swallow every time it happens. We were seizure free for almost a week. Now we were back to square one.The doctor did say to give her medication a minimum of 3 days and up to two weeks for it to get into her system. So, we went on about our day hoping that was the last seizure ever.

Oh how I was wrong. It was Wednesday. I once again woke to her squirming that morning. A little side note, her seizures have only happened when she wakes up. Every single one of them. Because of that, I wake from a light sleep at any movement or noise I hear. I roll over and turn my lamp on. She had "the look" and again out of no where, she began to seize. I do my routinely protocol. Roll her to her side, grab my phone, record it, which also times them, wait it out, jot it down in my notebook that keeps track of all her seizures. They leave me nauseous and shakey every time. Caleb had already left for work. I shot him a text and told him what had happened. My sister in law and her boys were coming over that morning for haircuts. So I rushed to get ready and kept my eye on Kinley. I kept repeating in my head what the doctors had told us and was holding on to every little positive thing I had heard. My sister in law and the nephews show up. I got their hair cuts done and when they were about to leave, Kinley woke from a nap and once again seized. I had never had anyone else around but Caleb and my mom see them so I didn't really know how to act. (Sorry Amy :/) All her seizures have so far been around the 2 min mark. Once she left, I again texted Caleb and said that round 2 just happened. He called back and said that he thought the doctor said that if she has 3 or more in a day that she needs to be checked out. I honestly couldn't remember. There was so much information given to us that I could not remember everything. I was trying to be there for Kinley. She usually does ok after just having one, but 2 or more and she goes down hill fast. She is wiped. Her body is limp, a dead weight. She won't even hold her head up. Between trying to take care of her, and a million phone calls between Caleb, the doctors, and other family, it was starting to overwhelm me. I needed to think things through. What were we doing? What was our plan? What if she has a 3rd? I finally get a hold of the neurologists nurse. As of now, we were ok to not take her in. We only need to take her in if she had 3 or more within 15 min. I tell her what is going on and after she talked with the neurologist, it was decided to double her medication. We were supposed to wait at least a few days to know if it had any affect. So, again, we were here to wait and hope she doesn't have another seizure. Because of the chaos, Caleb was able to get out of work because we thought earlier that we were going to have to take her in again. He was now home and I was no longer alone. That was a huge relief. We went over what the doctor said and just planned for a worst case scenario. We had planned out that if one of Kinley's seizures had her stop breathing or made it to the 5 min mark where we would need to call 911, that we would know what to do, how to stay calm, and how to be the most efficient in a terrifying moment. I mainly wanted to know how to go about it all if I were alone and Caleb were at work. It's so crazy to me that I have a plan of how to get an ambulance here if needed. Who has to think about that? Like actually realistically think that that may happen. During our chat, Kinley was waking from a nap. We were geared and ready for it to happen. We know it happens just about every time she wakes up. We had our phone ready and on record and were just waiting. I was holding her again and sure enough. She began to seize. Oddly enough, it's like we are almost getting used to them. They are horrible to watch, but because there have been so many, we know the routine, we know the protocol, and we know what's to come. All of her seizures kind of vary. Some are more mild, some are more intense. None are fun to watch, but man, the more intense ones are the ones that really get me. This one was about 2 min. again. Now that she had had 3, you could tell she was done. She was wiped. She went back to sleep. About an hour later, she wakes up in my arms again. Caleb was there still since we were still talking. A 4th was about to take place. I can tell when she is about to seize most every time. She has a look about her and the way her body is, I can just tell it is going to happen. She began to seize and this was her longest yet. It was a more intense one and was not fun to witness. Again, the shaking, twitching, grunting, noises made, drooling, it all will forever disturb me. 2 min...2:30....3 min. I am really starting to panick. Please stop. Please stop. 3:10...3:20...3:23 and it stops. A huge sigh and my baby starts to cry. I start to cry. She is weak. She is limp. She acts exhausted. Can't hold her head up, super fussy, wants to be held and sleep. 4 in one day? The day is young, who knows how many she'll have. I am nauseous. I want to puke, I want to cry, I want Caleb, I want to be mad, I wanted them all to just stop. Please just stop. I wanted my happy healthy baby back. Why us? Why her? I just wanted it all to be over.

When I went to bed that night, I was scared to death. I was emotional. I didn't want to go to sleep. I didn't want Kinley to go to sleep. I didn't want Caleb to go to work the next day. I didn't want to be home alone without him there. I kept telling myself that "tomorrow is a new day, and will be a better day." I and held onto those words in hopes I would be right. Yet, I was once again wrong. I woke up yet again to Kinley seizing. 1st seizure at 7:30 a.m. She fell back asleep. 8:30 a.m. I woke again to another seizure. She fell back asleep. 9:50 a.m. I woke to another seizure. She never sleeps in that late. I knew she was wiped. She was just like the day prior. Fussy, limp and wiped out. I called the neurologist and told them that I know it's early to notice a difference, but I want to switch medications. They've only gotten worse. After phone tag between the doctors and Caleb, my dad showed up at my house. It was so nice to see him. It was nice to be able to talk about things and also very nice to not be alone. While my dad was there, I got a call from the doctor. They thought it may be smart to do another EEG while she is having so many seizures. They suggested that we do it at a hospital here so we wouldn't have to drive all the way down to Salt Lake again. Long story short, no hospital here will do an EEG on a 4 month old. After talking things through, we stayed with our original plan and were going to wait em out and hope that this medication works. Kinley had 4 more seizures that day equaling out to 7 for the day. Her last one scared me to death. She was eating and dozing off. She stopped, and began to seize. I rolled her to her side but the noises made scared me. I could hear that she still had milk in her throat and I didn't know what to do. I yelled for Caleb kind of in a panic. He came running in. He saw what was going on too, but what do you do? I was just hoping and praying she wouldn't choke, and that it would just dribble out the side of her mouth. The two minutes was up, and she stopped and immediately fell asleep. I once again, cried because it just scared me. I usually do ok but the ones that seem bigger, more intense, and when there are noises, they are usually the ones that make me feel very scared. Caleb reassured me she was ok. We were ok. This unfortunately is just a rough patch in life and we will get through it. I went to bed nauseous and finally fall asleep. Kinley woke up every. single. hour that night. Another day has rolled around. I cracked open a dr pepper and was ready for a new day. I feel like a zombie today. I have bags under my eyes, and a headache that won't leave. All night I was so on edge wondering if she'd seize through the night. She never did which was surprising. But, by 8:30 this morning, Kinley had already had 2 seizures. It's now 6 p.m. and she's had 7 total today. Sadly, I am just planning on more. She's currently asleep in my arms and I'm just waiting for her to wake up and seize.

I have no idea what the future holds. I don't know what tonight, tomorrow, or the next day will be like. Seizure free? More than 7? No clue. I have no idea if this medication will work. Not to be a downer, but I honestly feel like it won't and that we will be trying something else out here soon. I don't think I have ever been so scared in my life. I guess because I'm a newbie at all things seizure related, it's all new, it's all very scary, and there is a lot to learn about them. I'm trying to do a bunch of research and I call the nurse any time I have a question. She now knows me by name because I've called so much. I'm THAT mom. The more informed I am, the less freaked out I am.

Certain things have triggered bad memories. Certain outfits that Kinley has worn when she has had a seizure, especially her big ones that lead to bad memories, I can't seem to put her in. Certain times of the day, certain area's of the house, just anything that triggers the scary memories I seem to avoid. It's getting harder since it's happening so much.

I fear things that most people wouldn't think twice about. I fear sleep. I HATE going to sleep at night. I hate when Kinley goes to sleep because I know when she wakes what will happen. I hate that I can't do anything as simple as take the garbage out, or run bills to the mailbox because I fear that while I'm out for the 2 min, that she may wake up and seize while I'm not there. I fear I will look back at her in the car and see her seizing, or the multiple times I check on her while I shower not sure what I'll see when I open the shower door. Will I wake up to my baby seizing? Or will she be sound asleep? Will I look at her in her swing where she's had previous seizures and see her seize? Or will she be content and loving it? I feel like I cannot and will not be away from her or her not in my site. I know some people have told me that I cannot let this rule my life, but until she is seizure free, it probably will. I think I will become a hermit and have Caleb run my errands because I don't want to be out alone and have her seize on me multiple times.

I hate that in the moment of her seizing, that all I can do is watch and sit there till it's over. I feel hopeless. I hate how it makes us all feel. I hate that she has to go through it. I hate that all she knows right now is how wiped out she feels. She occationaly smiles, but they're soft, almost as if they're weak. She's not like she was just a few days ago.

Caleb has become the biggest softy I have ever seen. He isn't one to cry or get emotional about things and tends to keep scary things to himself. I have seen him become so soft hearted and really open up about this. Apparently Kinley just made him a big ol softy. He nearly cries when he sees her seize or looks back on videos. Shh, don't tell him I put this on here.

My sister in law and mom both have told me that even though this is a trial, that if I look for the blessings in it, they'll be there. I have honestly tried and am not seeing much. I more so have felt angry. It's selfish of me because I know this isn't about me, it's about her. But parts of me wonders why god would give us the heartache trial of infertility. The medical bills, the trying and frustration and heartache that comes with it, to finally, finally getting pregnant, waiting so long, finally meeting this sweet baby, and now throwing this at us and making her go through this. It doesn't seem fair. I know he has a plan and apparently this was part of it. I'm still trying to find the good out of it but I'm just not there yet.

I have an appreciation for single parents. What a hard thing to do, especially with a child that has any sort of sickness or medical issue.

I am grateful that I am a stay at home mom. I am grateful that I can put my full attention toward Kinley during this time. I'm grateful for Caleb. His support is what keeps me going. It seems like he is at a strong point when I am at a low, and that I am strong when he is at a low. We work together. We are positive for each other.

I am grateful for the support we have received from family and friends. The countless texts, messages, checking in, just everything means more than they'll know. Today we were given an oil diffuser with a couple different oils. Both me and Caleb have never gotten into the whole oils thing but we figured we would give it a shot. What do we have to lose? Our house stinks like old people now, but if it makes her seizure free, I will gladly smell like an old person. Still, we are SO thankful for the fact that someone even thought about us and is willing to give us something that could possibly work.

I'm grateful for the help that Caleb has received at his work during a super hectic week so that he can now be home with me for the weekend. It's scary to be alone even though I've seen a bunch and know what I'm doing.

I honestly feel like because of going through infertility, I have truly cherished every moment with Kinley. But now dealing with seizures, I greatly cherish those small grins I get, the laugh I haven't heard in a couple days, the coos and bubbles made. I celebrate every. single. milestone. If she wakes up and doesn't seize, that's huge! If she went more than two hours without a seizure, that's also huge! If she has only 6 seizures instead of 7 in a day, that's progress and also huge. The smallest victories can make me happy and recharged.

I am determined to get my healthy babe back. Life lately has literally been sleep, seize, diaper change, eat, repeat. She has been fussy, limp, whimpers, and is so not herself. She is typically such a well natured little thing and it is heartbreaking to see her so miserable. Especially because I don't know exactly what she is feeling. I hear that people that have seizures, especially multiple a day, there are headaches, sometimes migranes, muscle aches, and simply just wiped out. I can't imagine what she is feeling right now. I know she is exhausted. She won't let me put her down for anything. She is wiped out. We will get through this. We will get this managed at some point.

I will do whatever it takes to get my sweet cheeks back to herself and seizure free. I hope and pray this medication kicks in and solves the seizure problems. If it doesn't, I pray that the next medication will so that Kinley can get some relief. We sure love you baby girl. More than you will ever know!!

Epilepsy--Kinley's story

Day 1. In my last post, I mentioned we were seeing a doctor that Monday because Kinley had just had her 3rd seizure. Monday rolls around and It was time to take her to her appointment. Caleb was able to come with me and we were able to see our original pediatrician. When we got there, I once again told him very detailed of whats going on. Since I was finally able to record Kinley's seizure, I showed him the video to see if he too thought they were seizures. The last two doctors both told me no, given, I didn't have a video to show them, but I wasn't taken seriously. The doctor agreed that he too thinks they are definitely seizures and he referred us again to the pediatric neurologist. Because I hadn't heard great things about him, I also asked for a referral to a doctor at Primary Children's in Utah. That was that as far as the appointment.

On our way home is where everything changed. Kinley got pretty worked up at the doctors and crashed when we were driving home. Me and Caleb decided to stop at a little restaurant for take out before we got home. When we walked in, and while we were paying for our food, Kinley had just started to wake up. She seemed different than her usual self. After we payed, we sat down to wait while it was being cooked. Kinley still just had a weird look to herself. Out of no where, her eyes rolled back, and she began to seize right in front of me and Caleb. She was still in her car seat. I told Caleb to record it. He pulled his phone out and started recording. We both just sat there, helpless, freaking out on the inside since we were in a public place, and watched our baby girl seize. It was her worst one yet and it was horrible to watch. The shaking, the twitching, the noises made, the trying to cry while seizing but couldn't, probably will forever be engraved in my head. I just rubbed her shaking leg, told her everything will be ok, mama's here. Whether or not she could hear me, that's all I knew I could do in that moment. The time was getting up there again. Just over 2 minutes long, she finally stops and cries. I immediately take her out of her seat and just hold her. My body is weak, shakey, terrified, and nauseous because of what I just witnessed. I began to cry and the employee tells us our food is ready. We grab the food and head home. It was a silent car ride. I knew right then that we were NOT going to see this Idaho Falls doctor. I wanted my baby to be seen by the best there is. And I want her seen now. This was my baby here. This couldn't be happening. Why us? Why her? I started getting angry. We waited years to meet this baby and now God is throwing this at us? Hadn't we had enough? We got home and Kinley had fallen right back to sleep after her seizure. I just held her and sort of ate. I didn't really have much of an appetite. After I ate, I sat down on our recliner and debated whether to wake her so she could eat since it had been a little bit. I held off and tried to make an appointment at Primary Children's hospital so she could be seen. I couldn't get through to them both times that I called, so I left a message in hopes of them returning my phone call. I also had calmed down some and decided to call the Idaho Falls neurologist to see if she could be seen ANY sooner than her appointment which was on the 21st. The lady I talked to was very rude and said there was no spots available and didn't seem to care or have an ounce of sympathy for my baby. Once I said told her "ok, I am not just going to NOT have my baby seen so I will just take her to Primary's" she instantly said "oh wait, you know what? It looks like I do have an opening this week." Bull crap lady. You just argued with me for 5 minutes saying she couldn't be seen. Keep your appointment. I'm not going there. I hung up on her because she made me mad. I sat down and decided to wake up Kinley to eat. Caleb was by me. When she woke up, the exact thing I just saw an hour ago was repeating itself. I knew she was going to seize. I could see it in her eyes. I told Caleb to once again record it. He pulled his phone out and sure enough, her eyes rolled back, and she again began to seize. This time right in my arms. I rolled her to her side and we again sat there helpless and waited for it to pass. 2 minutes again and it's over. I put her on my chest and begin to sob. What is going on? We need to see someone now. What do we do? Where do we go? This cannot be happening. 2 in an hour? I called the pediatrician and asked if we should take her in. He said "yeah if she keeps it up." Me and Caleb pull up the video of the seizure she had an hour ago just so we could really pay attention as to what exactly she is doing. I once again started to cry while watching because it honestly was just horrible to watch. I tried to pay attention to certain details she did so I knew what to tell doctors. Right after the chaos, I am receiving phone calls asking how her doctors appointment went. My mom was one who had called. I cried to her telling her she had just had 2 in an hour and that we were thinking about taking her in. She said she would call me back after she talked to dad about what he thought. While we waited, Caleb told me he wanted to give her and me a blessing. In that moment, I appreciated my husband so much. I appreciated that he holds the priesthood. I appreciated that he was aware of what we both may need. He gave Kinley's first. I cried through hers as I listened to the blessing she received. He then gave me mine, and I cried through mine as I listened to the blessing gave to me. The spirit was there. It was strong, and I also just felt at peace that we would get this figured out. It was now game time. I was over feeling sorry for myself. I was ready to get the help we need and to stay strong for my baby. My mom called back and said her and dad were gonna stop by. When they came in, we made a game plan. Since I couldn't get through to Primary's and they hadn't yet returned my call, and because the fruitcake receptionist wouldn't squeeze me in to be seen in Idaho Falls, we decided to head down to Primary's that night and to just take Kinley to the E.R. We knew she'd be seen that night and that's what we felt was best and that that's what we should do. Mom and dad left. Caleb left to take Libbie to his parents so they could watch her. I began to pack my bags. I was already exhausted. Everything from the lack of sleep for the past weeks, the emotional roller coaster of what was going on, the nausea from everything, and the crying that leaves you with a headache and exhausted. But, this wasn't about me. I had to somehow, somewhere, put aside the fact that I wanted to throw up and muster up the energy to drive 4 hours away and get the help needed for my baby.

It ended up being me, Caleb, and my mom that headed down. We left at 8 that night. I secretly was hoping someone could drive for the first stretch until Kinley needed fed so that I could hopefully get a little sleep, but, both my mom and Caleb have intense anxiety about driving that fast, and traffic and what not. They both offered to drive, but, no offense to either, I wanted to get there sooner rather than later. They both sometimes drive under the speed limit. haha. I have no problem with it so I drove. I had my mom sit in the back so she could watch Kinley. We made it just past Shelley when Kinley starts to wake up from a nap. My mom said, "uh Shalei, she's...yep, she's seizing." I had her record it as well. I try to stay calm as I am driving 85 mph, and had Caleb and my mom pay attention to Kinley. I could here her seize. It was dark, my eyes were on the road, yet I can here her noises and her seizing. After 2 minutes, it stops again. My goodness. 3 seizures within 6 hours. I'm so glad we are on our way down there, yet we all were nervous. We were praying that she wouldn't seize until we got there at least. Especially because we knew most the drive was desert and we'd be in the middle of no where. It kind of doesn't settle well. We stopped once to feed Kinley and get gas, but we did make it up to Primary's at around 11:30 that night. We got into the emergency room and checked in.

Day 2. They checked us in, got some paperwork done, bracelet made, and then we waited. I ate a granola bar since I was starving. It wasn't too long of a wait and they called us back. They took her weight, temp (she hated that since it was rectal), blood pressure, all that, and then took us to a room. By this time it was probably 12;30 a.m. We all had the tired look on our face. After seeing a couple doctors there, they said they'd admit us, but that because it was still flu season, that only 2 adults could be in the room. It was 2:30 by this time. When they said that, I was mad. My mom said she'd just go get a hotel. No. I had her come with for a reason. I was not about to send my mom out by herself in the middle of the night in a huge city all of us are unfamiliar with to go find a hotel. Not happening. Caleb offered to sleep in the car and give me and my mom the room. Morning was in like 4.5 hours anyways and by then, 3 people could sort of be in the room. So that's what we did. They got us admitted and into a room. Caleb went out to the car to sleep. Me and mom shared this tiny little bed and Kinley was in the crib. I couldn't sleep. I was so scared for Kinley. I was on edge wondering when she would seize next. I couldn't see her from my bed so it was just a LONG night. I chose to hold her and try to sleep in the chair since I wasn't sleeping in the bed and I maybe dozed for a half hour. She was asleep so I chose to lay her down and attempt the bed again. I got maybe another 45 minutes before I woke up to nurses coming in to check vitals again. I felt so sick that whole night. I think just the anxiety, exhaustion, and me being starving was causing it. I got sick at like 4:30 that morning and ran to the bathroom down the hallway. I came back and dozed here and there till nurses were in for good at like 6. I think maybe total I got like mayyybe 2 hours of sleep. My poor mom too also got like zero sleep. Caleb came in that morning and he got no sleep. He said that the car was freezing and uncomfortable. So here we were for day two and exhausted. That morning doctors and nurses were in all morning. We finally met with the neuro team and told us what tests they wanted to do. Here came the not fun part. I knew there would be some hard parts because who would like watching your baby be poked and prodded for an IV, and the different tests to be done? I knew she was uncomfortable and tired, and she screeeaamed for the iv. Not fun. Once they got her iv in, they did blood work. After that, they got her all hooked up for her EEG. She also hated that. Then they did an EKG. They wanted to capture a seizure while being hooked up to the EEG. So she was hooked up to that for most of our stay. Other than that, we were there to wait till it happened again.

The EEG guy made her a bow ha

While waiting, we would switch off and take rest when we could.

So grateful for my mom.

We waited all day and nothing. The neuro team came back in later and said they wanted us to stay till they caught one. So because of that, they were sending us upstairs to a better room to stay. We were kind of surprised. Because of that, and now knowing how long we'd be there, we decided to send my mom back home. I felt so bad. I didn't want her to leave, but at the same time, there was nothing for anyone to do. We were just waiting. Plus having a 3rd person there wasn't going to work. I felt bad for even having her come because it was more of a hassle than I thought it would be. So, I had Caleb drive her down to the bus stop and she rode the bus home that night. I felt awful! Not fun. Oh, and side note, she almost got left at a rest stop because the driver "didn't see her get off". Oh brother. She got home at like 10:30 that night. As for me and Caleb, they finally got our room ready at like 8:30 that night. They came to flush out her IV before we went up and it turned out that Kinley sweat it out. Guh I felt bad! That meant she had to get another one later. :( They were ready to take us to our room. When they brought us up to it, I was ticked. It was a shared room, it was smaller than the one we were just in, and there was just a couple of chairs with only 1 folding to a bed. We needed sleep bad. The night nurse that night was not my favorite. She told me no to 1. bringing in Kinley's rock n play. 2. No swapping chairs for a 2nd bed. 3. No co sleeping. 4. Told Caleb to get off the floor from sleeping. I get it, hospital policies, but seriously, at least be nice about it. And make us at least somewhat comfortable. Anyways. Caleb slept horrible that night because he only had a chair to sleep on. I too didn't sleep good. The nurses come in A LOT.

Day 3. Still no seizure. We had a new nurse and she was absolutely wonderful. Best nurse we've ever seen. We were still just waiting for a seizure to be caught on the EEG. So we mainly hung out all day. That morning, we had to go down the hallway a ways but we found a shower and were able to finally shower and clean up. That alone made us feel a bit more human.

Kinley also had a much better day that day since she wasn't being poked around all day. 

That evening, my sister came to see us. That meant so much to us. She drove almost two hours to see us. It was nice to see her and made the night go by faster which was nice. Then late that night, my cousin came to see us as well. She works there and I had no idea. It was also nice to see her. We also got neighbors. I was a little peeved just because there is literally a curtain between us. No privacy. You can hear every conversation, and you are basically sharing a room with strangers. It was a couple with a brand new baby. You could tell they smoked, so I could smell it all night. Caleb was taken to a Ronald McDonald room. He slept there that night. He said he still couldn't sleep great because he was up worrying about us and it was hard for him to not be with us in our room. I too hardly slept again because the neighbors had one sick little baby and there were nurses with the most squeaky dang shoes alive over there ALL night. Plus, they had to go through our room to get to their room. They were not quiet at all, still talked loud as if it were daytime. So, that was annoying.

Day 4. Morning came around and still no seizure. They said they wanted to do an MRI that morning. They had to sedate Kinley and because of that, I couldn't feed her past 5 that morning. It was so sad! She cried a lot because she was hungry. That morning, the neighbors baby like, almost died. The machine was beeping and within seconds, their room, our room, and the hallway was filled body to body with doctors, nurses, and security. It was very intense. Because of the chaos, Kinley's MRI got bumped back a little bit. During the chaos, they had to put in her 2nd IV. That was again not fun to watch. They poked and prodded at her little hand and almost had it, but then didn't. So they removed that one and tried a different spot. Again, they poked and prodded but they did get it. Kinley SCREAMED through it. Ugh it's hard to watch. Plus she was starving, I was dying because my nurse hadn't brought me a pump yet, and we all were just ready to get this over with. 

Then they came to remove her EEG stuff. It's VERY sticky goopy stuff so it pulled her hair and some spots it ripped her skin too, So sad! Finally about noon, it was time for the MRI. That too was not my favorite. The thought of them having to put Kinley under just made me sad, and scared me too. They're bodies are just so small and pure and it was just scary knowing she had to be put under. I held Kinley while they gave her the anesthesia through her IV. As I held her, I watched her be alert to then go limp, then to sleep. Once she was put under, I had to hand her off to a lady who then took her to the MRI machine where we watched as they strapped her whole body down so they could do the scan. I started to tear up watching her. As we walked away, I just started to cry. I know these things are done every day to babies and people, but this was my baby here and it was just hard to watch. I didn't want to leave her for a second. While they did the scan, we left and hurried and found a shower down our hallway. I knew the scan was only going to be about an hour so I hurried and got myself somewhat put together. Before they brought her in, I got sick again. My stomach was everywhere from the stress. They wheeled her back into our room about an hour later. We tried to wake her for a good hour and she wasn't having it. She finally stirred enough to eat, then went right back to sleep. She was very groggy and sleepy for the rest of the night.

The Neurologist came in to talk with us. Kinley has Epilepsy. Another word for someone that has seizures. The EEG and MRI looks good, which is good. But it doesn't explain why she is seizing. So we still do not know what is causing it. What we do know by just the videos we have caught, is that her seizures are partial complex seizures that rapidly go to general complex seizures. As of now, they put her on a seizure medication. It's trial and error of medication and dosage to know what works and doesn't. She may grow out of them, she may not. If she does grow out of them, it typically isn't until older childhood, young adolescent. It depends on the person. We will be back down in a month for a follow up if this medication works. So, all in all, this is good. Still we wonder why she is having them, but at least we now know that it's managable with medication and she has been seen. There's seizure precautions we were told about and we need to still keep a close eye on her. We feel good about the outcome and we hope this medication is the right dose and does the trick in keeping these seizures under control. 

Her poor head :(

We had to wait till she was eating good and making wet diapers before we could get discharged. We did get discharged around 7 that night.

Ready to go home!

It felt so good knowing we were headed home. The ride home was a bit rough. Kinley you could tell just didn't feel great, she had a massive blowout in her car seat, she cried a lot, we were so tired and just ready to be home. We finally got home at like 11. I gave Kinley a bath, then we all went to bed. I think I fell asleep before my head even hit the pillow. 

Her little bruised hand :(

Feeling MUCH better being home.

Looking back at the experience, it's interesting to me. I look back to the time I just KNEW something was wrong. I had this weird feeling for like 3 solid days and I couldn't put my finger on it. Then that morning she woke and had her first seizure, I then knew why I was feeling like I was. The spirit is strong. After two doctors brushing off the situation, I still wasn't happy nor did I feel right about the situation. I KNEW, they were seizures. I knew we needed to take her to that 3rd doctor. I knew we needed her seen by Primary's over the doctor in IF. I do feel like mom's have this sixth sense and just know if something is wrong with their baby. I don't think there is anyone that knows their baby more than the mom. I am grateful for my husband. He kept me strong and was the shoulder to cry on when It got hard. I'm grateful for my mom. She dropped anything and everything to be with me for emotional support. I'm grateful for all our family, and friends. I had SO many texts, calls, messages on Facebook, a couple of people put our names on the prayer roll at the temple, and just a ton of support. We felt everyone's prayers and are so grateful with how blessed we are. We are grateful that Kinley is still otherwise very healthy. We sure love you sweet baby!

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