I haven't blogged for nearly a month. Probably because I've been super busy and Kinley keeps me from having zero down time haha. We'll start with all the random updates.
A couple weeks ago, I had my mom come with me to a podiatrist appointment so she could tend Kinley. Stop reading if you get grossed out...but, ever since I had Kinley, my big toenails had stopped growing completely. They are just now starting to grow and she's nearly 9 months old. Where they have now started to grow, you can now see a new nail that's growing underneath while the top one is starting to fall off. After being terrified that they may amputate my toes or something and long story short, he didn't really know why this was going on and that he's thinking that my hormones affected my nails. This happened once before right after I had that laparoscopy surgery a couple years ago. So that too leads to the same kind of thing...hormones. We're gonna watch them and see what happens but when Fall comes around and we still aren't seeing improvement, we will remove my nails and start fresh. So, yep, that's my news. Having a baby is causing my toenails to fall off and grow new nails. It's embarrassing because it's once again, just another weird thing that happened to me and something I had never heard of on someone else. Having a baby took a huge toll on my hair, my nails, and my skin. All three are very different than before. Maybe one day I will have good hair and nails again.
Since having my vinyl cutter, I made Kinley a cut out for her room. That thing is kind of a nightmare to work with. After many frustrating moments and wasting many feet worth of vinyl, I got it done. It didn't turn out how I had planned in my head but I'll keep practicing and replace it later when I get better.
I FINALLY got my bathrooms put together since moving here. I hadn't had bathroom rugs or a decent shower curtain so now we do.
Last Monday, Kinley was extremely fussy and I just could not figure out why. She was extremely clingy and I had done all I know to do. Then that night, she came down with a cold. I felt so bad! That night was probably one of the worst nights to date since having her. We both literally did not sleep. Me and Kinley had my bed and Caleb ended up on the couch so he could get some sleep since he had to work a 15 ish hour shift the next day. Lets just say, snot covered both me and her head to toe along with my pillows and blankets, there was a lot of crying and not being able to breathe, lots of snot sucking, and lots of cuddles. I felt so bad for her. She was miserable all night. So all last week, she had been sick and just not feeling well and we both were exhausted from the lack of sleep. It was a long week.
She NEVER falls asleep like this. As awful as it is when they are sick, I sure do love the snuggles.
Here's some random pictures.
One of her favorite spots to go play.
She started crawling a couple weeks ago and has now started to pull herself up to a standing position. Big girl!
We got her a new car seat so it would be more comfortable for our road trips. Big box to play in!
Out to dinner.
Haha! We play this game a lot. So far, the record is 5 of those blocks. :)
Hanging out at my parents while uncle Tyson holds the babies.
I seriously love having a little buddy to hang out with during my days while Caleb is at work. She's so much fun!
Static hair haha and I had cut a good inch off the top too.
She makes the funniest faces sometimes.
Now onto SLC. So on Sunday, we loaded up and headed to SLC because we had Kinley's appointments.
After myself then waking up with a raw sore throat and a chaotic morning, we finally left and got down there around 6 that evening. We checked into our hotel, ate dinner that I had made and brought, watched the movie Taken, and just hung out.
Monday was the day of her first appointment. This was the one we were especially nervous for. We were meeting with the Metabolic Genetisis. We were nervous because we were left hanging at her last appointment with what could possibly be wrong. There was so much frustration and phone tag trying to get this appointment even made. I had NO clue if they were going to do more testing, or if she had a blood disorder like the Neurologist thought or what. So we were a bit hesitant.
Long story short, the doctor believes that the super high blood results and urine was caused FROM the seizures. He wanted to re run them just to see if they had gone down again since she had been seizure free for a while now. So that overall is a really good thing! The other levels that were high are caused from her having a b12 deficiency which makes me kinda feel like a crummy mom even though I know it's not my fault. Long story short with that, when we were going through infertility. my OB put me on a medication that I am still currently taking. Where I am breastfeeding, sometimes this particular medication makes it so I myself cannot absorb the b12 let alone pass it on through my milk. So it could either be the medication, or something about my body making antibodies and having it so she can't absorb the b12. So depending on her blood results, we'll know if we need to do b12 injections or not. He does not believe she has a blood disorder which is GREAT and he doesn't think that the high levels is anything to be worried about and that as of now, she's just got epilepsy and that that is what we need to worry about. We may be seeing him in 3 months depending on the results of the blood and urine tests. We left feeling good about everything.
We came back to the hotel where we ate lunch, Kinley took a nap, and we kinda just hung out. We were on a budget and we both were just tired, had headaches, and not in the mood to do much. We made a quick trip to Wal mart for a couple things but then came back to the hotel for the rest of the evening. The trip wouldn't be complete without dealing with a blowout. I took care of that the best I could haha. It was seriously a FUN night. We had nothing to do but to sit on the bed, let Kinley play with her toys, and talk. We talked for hours, laughed till we cried, and it was just a FUN night.
Tuesday, we got up, packed up, and checked out of the hotel.
We then had to go to her Neurologist appointment. That appointment went well too. She's 17 pounds of cuteness which actually makes her quite petite. She's a petite girl with a big head. haha.
That was just a follow up appointment. Kinley hasn't had any seizures since they put her on the 2nd medication. We decided to start weaning her off the first medication called Keppra since it was proven to do us no good in the first place. I'm a little nervous and hope we have no breakthrough seizures but I'm happy because I wonder if when she gets taken off of it if she will sleep a little better. Not sure. The biggest side effect to that medication is cranky and irritability. So we'll see. Since they have to check the medication level through her blood, we then had to go get her blood drawn and a urine sample done. To collect the urine, they have to put a certain bag in her diaper and then just wait till she goes to the bathroom. So, they put that in, then did the blood work which went better than previous times. The nurse got the vein on the first try and was a lot more "tender" which was exactly what I was praying for. I know we can't NOT do the bloodwork so I always just hope we get a good nurse that's kind, gentle, and can nail it the first time vs poke and praud for ever. Kinley still screamed through it and I had to hold her down while they did it. It's brutal and doesn't get any easier. After that, we were kinda there to just hang out and wait till she peed in the bag. We decided to eat lunch there at the hospital to kill time. While we were eating, she ended up going and since it's a bag, it's not really leak proof. So I too got peed on. We headed back to the lab where they took the urine. Then that was it! We loaded up and headed for home! We got home that night. We have a follow up in another 3 months. I got a call back today and we are again upping the dose of her medication. It's a lot of adjusting with the meds where she is growing and it goes off of weight. I just am SO so grateful for an overall good weekend with positive appointments. I had worried myself sick multiple times ahead of coming down. I had a lot of stress and anxiety, and I maybe whined a lot about coming because I was just scared of knowing what was to maybe come. I am SO so grateful for Caleb. I seriously am. He helps me chill out by doing nothing but being himself which is always just hilarious. He makes me laugh every day and me laughing helps a LOT with the stress and worry. He just made the trip fun even though traveling to see doctors isn't your typical fun thing to do. I love him so very much. I am also so very grateful for Kinley and that things are now looking up. That was one of the scariest times in my entire life dealing with what we dealt with and there is just no better feeling knowing your baby is growing, developing and learning, and is healthy.Yes we deal with a baby that has Epilepsy, but as of now, it is managed and that makes this mama very, very happy.
