Primary Children's Hospital - Kinley's epilepsy update

In April we had to go down to Primary Children's for a follow up appointment along with another EEG for our girl. This was the big appointment we all have been waiting for. I was so anxious and had so many thoughts before this trip. We were having another EEG done since it's been about 2 years since Kinley has seized and if it came back clear, we were able to wean off medication which is such a blessing. We all obviously want her off medication but there was a big part of me that was so scared of doing that because all I know of Kinley not being on her medication was a seizing non stop little girl and to relive that terrifies me to death. For her EEG they had to have specific rules to basically trigger a seizure. Stuff like no sugar, and she had to be sleep deprived for it. So we had to put her to bed at like 10 that night then I had to wake her at 4:30 that morning. Since we were in a hotel I brought new toys and stuff to keep her occupied while in the hotel. No one slept that night including kinley so with that and only having given her just over 6 hours of sleep, she was definitely grumpy. We spent all morning and afternoon at Primarys. The EEG was a nightmare which we planned on. Kinley hated it and screamed the whole time. They had to have her look into a strobe light for probably well over 5 min to stress the brain and basically see if they could trigger a seizure. After a snotty crying fighting mess the EEG was done after about an hour. We had a little bit of time to kill before her next appointment, so we played with some toys there. Then it was time for her next appointment. Long story short, her EEG came back clear, YAY!! We all kind of expected that especially where she's still on seizure meds. But with the 2 years seizure free and a clean EEG, that meant we could wean off medication! No more daily fight to get her to take it, exhausting EVERY single option I could think of to get that stuff down, no more countless blood work, no more traveling to Primary Children's, and I'm hoping this improves her sleep. I seriously hope that this phase of life can be in the past and that I can mostly mentally move on with my future life goals. We are still on seizure watch for the next year so we aren't completely out of the woods yet. She has a 25 % chance that she'll seize again and if she does, we'll have her medication and rescue medication (which cost us just shy of $500) on hand and the clock starts over with EVERYTHUNG. I'm trying to stay cautiously optimistic. I want so badly for this to be a thing of the past and for this to not be a future part of her life. I dream of a healthy happy bright future for Kinley. I'm pretty sure that's all any parent wants for their kids. Kinley's epilepsy brought parenthood a whole other level of hard and I think I would be such a different kind of mom had I not been put in this situation. But, that's life, and although this journey has been so hard mentally, I do feel like this trial has brought its good too. Kinley has only 2 more doses of medication before she's off and we are gonna celebrate for sure! We're so happy she's healthy, happy, and thriving. We love you Kinley Ray and look forward to a seizure free life with you!

It was a snowy day while at Primarys

She CLUNG to Caleb this trip. She's become such a daddy's girl. He's a smitten kitten with her which makes my heart all gushy.  After our appointments, we just ate our late lunch there at the hospital then came back to the hotel to wash Kinley's hair from the EEG. It leaves major glue allll over. After that we headed to this amazing aqaurium in Draper. So worth it! Kinley loved it but still said most fish were "discusting" haha. 

After a few days we were headed back home and hopefully not headed back into those hospital doors ever again! Fingers crossed!! 

February and March

I hate when I get so far behind! So once again, I'll do a quick recap on the last couple months, just so I have it documented.

Kinley and I both got pretty sick the beginning of March. Doctors and more doctors. It ended up being bronchitis and ear infections. Antibiotics and steroids. With Kinley's sickness though she threw up 3 times over the course of a few days and had a fever for 4 days. It was a rough but we made it through! We had a scare with Kinley a couple weeks ago. She has had a couple different rashes going on. One on her arm and one on her feet. After trying to get rid of them myself for over a week I ended up taking her to a doctor at her pediatricians office. That visit was actually scary. He made it out to seem like they could be really serious  wanted to get blood work right away and the feeling there was scary. He thought it was maybe a blood disorder or something. He wanted to do blood work, check with her neurologist at primarys, look into her seizure med, and just made it seem like a big deal. I'm alone and scared. The blood work went terribly. It took 5 prodded pokes. They for the life of them could not find a vein so they ended up doing a heel prick and squeezed blood out of her little foot for probably 3 minutes till it filled the vile. My heart ached for her. It was brutal. There's nothing worse having to hold and pin your child down while they look at you with sad eyes like why would you let them hurt me? It was awful. The second we left the hospital I started bawling. Things like that are simply too much. Especially because it triggers all the emotions and flash backs from when she was so sick with her seizures. I took her to artic circle for ice cream and called my mom and ended up bawling there too. People around and I honestly just couldn't hold it in nor did I care. It was a rough day. Long story short, thankfully the blood work came back good but we were referred to a dermatologist. After seeing them, we found that she has a viral rash on her arm and a weird type of excema on her feet. So we went from a blood disorder or leukemia scare to viral rash and excema. Talk about an emotional rollar coaster. Lesson learned, just go to the dermatologist first.

I went on a girls trip with my mom and sisters last weekend and it turned out to be so fun! I was pretty nervous for it but it went great! Zupas, city creek, ruby snaps cookies, ihop haha, swimming, hotel, Farmington station shopping, subway, home. We just went for one night and it was perfect. Kinley did great which made it that much better! That needs to become an annual thing.. Atleast! Haha

The rest of the updates I'll do through pictures. There's not really much more that we've been up too. Just every day life stuff!

"helping" with dinner haha

This hasn't happened in months. Some of my most cherished moments for sure. 

Discovered she actually does like peanut butter!

Caleb took kinley to the park for the first time while I was in therapy. She loooved it. 

Cousins on grandma's bed 

Playing at grandmas

Always "cooking dinner" haha

This girl has some attitude. 2 going on 16.

Caleb is good! He has been busy with work and often gets kinda stressed but the business is doing great! He's such a amazing dad to Kinley and always, always has her laughing. He's so cute, I freaking love that man!

I'm doing pretty good at the moment. I had a personal experience happen to me this month when I was sick and I think it has made the rest of this month go much more smoothly. I am still in therapy, and am seeking even more help in a couple weeks for my out of control anxiety. The weather and flu season leaving has helped me quite a bit. I'm taking one day at a time. I cherish every single good moment even if its as simple as sitting and feeling good. I'm busy with Kinley but overall  life is good.

Kinley is great! I swear she looks 5 years old now and almost acts that old too. I feel like every day she says something new, outs more words together, and is just growing like a weed. She's smart, and super funny. It's been fun actually being able to somewhat communicate with her and understand her needs and wants that much more. She has more sass and attitude that I know what to do with. Seriously I don't know where she gets it and I often just laugh because I don't know how to discipline the behavior because it's so often. I think it's just a phase and part of being 2! She loves to be busy and gets restless real quick. She enjoys being out and about and busy, but also loves her pepper pig show and coloring. It's all about balance with her. She still hates sleep and her sleep talking /night terrors/whining and crying in her sleep is out of control. It will happen almost nightly and go on for 3, or 4 hours before I eventually wake her up to start her sleep cycle over. She ends up in our bed pretty much every night. No one sleeps here. On average I'm up with her or because of her anywhere from 2 to 8 times a night still. Despite her sleep and overwhelming sass, she's so much fun. She makes life fun and happy and brings such a great feeling to our home.