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!!
