Kinley is on a 2 year epilepsy clock. She has to be completely seizure free for 2 years before they decide to ween her off her any meds, stop having the every 3 month or more appointments, ect. She had been seizure free since the end of April. She had some seizure activity is what they call it, a couple different times in the past. It't not where she goes into her full blown seizures, but it's still where the brain is misfiring and seizure activity happens. The other day, I was on my way home from town and Kinley was sleeping. When I got home, I woke her up and got her out of her car seat. She was totally normal, but then she did this weird thing where her head and left arm just shook for a bit really fast. Sometimes it's hard to tell whether it's just a weird twitch that babies do, or if it is considered seizure activity. With Kinley being an epileptic, we are to consider any odd behavior seizure activity. It actually doesn't surprise me that she did it. Mainly because her medication goes off weight and she for sure has had quite a growth spurt and has put on some weight since her last appointment and blood draw where they check her medication levels. So, I called her Neurologist and mentioned to them what happened and to see what they wanted to do. They called back and wanted another medication level check. So when we have to do them here, we just go to EIRMC and have it done there. We did that yesterday. It was horrible. I honestly have not been impressed in the slightest with their lab. She got an old hag that was just kind of rude, not gentle at all, and kept telling us we needed to hold her down better so she could get the vein. She had been poking for a while and there was already me holding her the best I could, another nurse, and Caleb holding her down while the lady tried to get blood. A lady had come by to try and help with a hand frog puppet and stuffed bear which I was thankful for, but then the hag that was drawing her blood told her to leave because Kinley was still kicking and moving too much. I don't know. She was just not patient and rude. A couple good pokes and some prauding later and she finally got it.
We now just wait for the results which I'm sure will just be another dosage change. The part that stinks is that since she had seizure activity, the 2 year epilepsy clock starts over. Anytime it starts over, I just think of future appointments and blood draws. It's always been hard, but as Kinley gets older, remembers more and knows more of her surroundings, it's getting even harder. And she's getting a lot stronger and hard to hold down. So, I'm sure when she is 2 and almost 3 years old, that will be super fun. Lots of traveling in the future. We have to go back down to Salt Lake for another appointment in a few weeks. We are hopeful that this is still something that she grows out of, but it very well may not and may be something we deal with for the rest of her life. We take it as it comes, and deal with things little by little. I'm just grateful that we have the help for it. Kinley is a tough little thing! Don't worry, we came home, I fed her mac n cheese, then peaches and ice cream for dessert, then snuggled before bed for extra long. All of her favorite things. Love this baby. <3
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