The epilepsy monster

I try to keep this blog as positive as possible but truth is not everything is rainbows and butterflies.  I try to live day by day because experience has taught me you never know how long situations are going to last. If you follow our story you know Sophia has gone through a lot, from several surgeries to episodes of dehydration and a lot in between. But with no doubt the hardest of it all has been dealing with the seizures.
I can deal with accepting her condition, with researching everyday about how I can help her with her fine and gross motor skills, googling nonstop about the best spoon so she can eat more independently, modeling and talking everyday with her PODD even when I don't see a lot of progress back, going through a lot of trial and error trying to find the best sippy cup so she can drink safely on her own, sticking to her routine because she does better when we follow it...  I can do all this as long and as much as she needs me to and i’ll do it gladly, but what I have a really hard time dealing with is the fact that all this becomes a thousand times worse because of the seizures. It makes me mad when I see how epilepsy affects the progress she has made, her balance and strength have decreased and although she works hard everyday to gain them back she still struggles a bit.
It makes me sad when I see how much she is trying to be her happy self but the seizures and the side effects of the medicines she is taking steal the smile from her face. I recognize that this has been better than last year because the seizures are a bit more in control than they were but still, the struggle never ends... Sophia has a VNS implant and she is taking three seizure medications and it's not enough, that's why we decided to give CBD oil a try. There are different brands, and within each there are different strengths and components. This has been a struggle on its own! It's a lot trial and error but I didn't want to give my little girl anymore pharmaceutical with nasty side effects.
We think we found one that helps a little bit, we have noticed positive cognitive changes, the potty training has been successful 80% of the time, she is a little more focused and alert, she is playing with toys a bit more purposely and her smile is on her face more times than not. Although it's really great seeing all this positive changes, that good feeling goes away as soon she gets sick because any illness is much harder when you have epilepsy. A simple ear infection can mess things up big time. Antibiotics can make the seizures worse and all the progress she makes seem to fade away right before my eyes. Every time Sophia gets sick I have to see her endure a few bad seizures and it's heartbreaking, I see myself struggling with keeping calm and giving her comfort because my heart fills with anger and wants to fight this horrible monster and eject it from our lives for ever... but I can't, all I can do is let it all out on this blog and keep living day by day and doing my best to be there for my daughter, after all she is the one truly dealing with it all.