Epilepsy update and Father's day

I know this post is once again me being pretty open about things, but this is for me and I want to be able to look back on this journey and remember experiences and emotions and see how far I've come. As of tomorrow, Kinley will be 2 months seizure free. I cannot express how happy and relieved in that aspect I feel. I can't believe we went from having 8 seizures a day down to 0. And it's all thanks to this 2nd medication. I think about the situation a lot and I often wonder what would have been or what could have happened if I wasn't annoying and didn't keep calling the doctors to push what I wanted to do. I don't know. Just a lot of what if's I guess. Something recently that has been hard for me and very frustrating is this whole follow up appointment that we had for Kinley over a month ago. Long story short, when we went to her follow up, we were told that her metabolic blood levels came back very high along with some urine tests. We both don't love this particular doctor and after asking what this meant, we were left with no answers and were left completely hanging. Because of this, my mind has assumed the worse. I have googled and tried to research which I know is a big no no and now I am that much more freaked out. Our doctor said she would get back to us within about a week with the results of the blood tests that they re ran because they wanted to see if the results changed. Well, a week passed and I didn't hear anything. So I called. No return call. Seriously I have called and called and called probably 3 to 6 times a week for OVER a month now and FINALLY this doctor got back to us. I was ticked because she is just now telling us that we need to do another urine test to re check some levels in that, along with them referring us over to Metabolics. I am frustrated because THIS exact reason was what we have been trying to figure out for over a month now and we are just now finding out. What if this is something that needs attention and we just wasted over a month? I keep telling myself that If it were that serious, they wouldn't have let us leave the office that day without being seen. But as a mom and dad left completely hanging, what else would you assume? It's scary. It's terrifying. I have struggled immensely with anxiety since her seizures and I cannot tell you how many times I have had to have Caleb reassure me that she is OK and that she will be ok. Even though I am so grateful she has been seizure free for 2 months now, I still am slightly a hot mess about all of this. Mainly because this whole deal just isn't over. We still don't have an exact answer and we are still seeing doctors. Since we now have to meet with Metabolics to see if she has a blood disorder, I cannot help but be just sad. Sad for my baby that we have to go down once again for more testing. Testing that I know will not be fun nor easy to get. More blood work, more urine, and who knows what other tests. I hate that she is only 6 months old, still a tiny baby, yet has had to endure more than anyone should ever have to in their life. People should travel hours away for fun, not for medical reasons. I pray with all my heart every single day that she is healthy, will continue to be healthy, and that IF this is something that isn't ideal, that she can still live a happy healthy life. I didn't know prior to becoming a mom how many times I would bawl myself to sleep in pure worry for my baby, how many times I would pull her out of bed just to hold her while she sleeps, how I still let her sleep in my room and probably will till she's like ready to move out of the house, how much I would miss her if I wasn't by her long enough to give a haircut, or how much I could possibly love her. She is the absolute joy and light in my life. The older I get, the more I realize how family is truly what this life is all about. Being a wife and a mom is what makes my heart feel fulfilled. I struggle daily with the anxiety and am in the process of getting it under control. But to my defense, I have witnessed and seen things that were a bit traumatizing and very hard to watch and they are like burned images in my head that I cannot seem to get out. So, from here, I am hoping for a positive trip to see the Metabolic doctor, and a healthy baby. We've come this far and I plan on continuing a positive and bright future.

It was Caleb's first father's day! I didn't do a ton but still wanted him to know how much we love and cherish him. 

We gave him this and I also made one of his favorite dinners. I am so grateful for Caleb and how he is as a dad. I love more than anything his positive happy energy, his gentleness, kindness, and love that he gives to our Kinley. She adores him and is now old enough that she will cry when he leaves the room and then smiles and giggles when he comes back. He is becoming more and more of a softy as Kinley get's older and I super love it. We sure love you Caleb. Happy Father's day. <3