Here is the low down on miss LilyAnna Blu.
Since surgery in April she was hospitalized 2 times and was in the ER 3 times.
She has dealt with constipation, two UTI's, a virus and then the virus settled in her hips and caused inflammation that caused great pain. All mostly resolved now.
She had 2 wonderful stays at the Ryan House whom we are forever thankful to the parents who made that place happen.
She has weaned totally off Sabril, in the process of weaning Triliptal and we are trying a CBD oil that is legal in our state, but not really showing much improvements of any kind. I am reading you have to give it time and tinker with the dosing. We aren't giving up, but I am loosing hope that it is the miracle we are seeing all over the news and social media, to us anyway.
Good thing is I have a protected heart. I have a money back guarantee type of surrounding so when things we are told will be that miracle and they never are I am not crushed like I used to be.
I am not crushed because while it may seem I have lost hope, I haven't really. I just lost hope in things that will never be.
Here is the deal. If Lily never goes a day ever again seizure free. Basically if for the rest of her life she has daily seizures, we won't love her any less. Will we do everything in our power to try to make her life on earth more comfortable? Yes. So I will always be willing to try something with the slightest hope of making a change for the better in her life, but I will never let those results crush my soul again.
I have spent years with soul crushing, hope sucking results from things we thought would be her saving grace. I won't go there again.
So yes we will give that study a try, give that new med a shot, we will try that 100% all natural herbal option (all under the care of her neurologist of course) but my hope will never be in a product. A substance. A remedy.
My hope is and will remain in God. Bad things happen. Pain can be crushing, but God is still good. We are still good. Lily is perfect. Created in my womb. God makes no mistakes.
I have learned if we live on the avenue of God makes no mistakes than we really can stand firm and safe knowing and trusting in that.
Andi is in a really uncomfortable state of pre-teen hell and scaring the living daylights out of me in fear of the teen future vastly approaching. She is also in volleyball and will be in The Hobbit at a local theater later this month. She is also super sweet and wonderfully helpful. So it's a give and take. Mostly feeling like taking lately, but we had a rough morning. You know the kind where I beat her and kicked her and told her to walk to school in the below zero temperatures. Actually none of that happened. I asked her to BRUSH HER TEETH. She did and stormed out of the house and walked to school (gasp) ever so mad at me in 60 degree weather.
Oliver is in karate and basketball. Oh and hip hop. They are both taking an after school class that they are loving. It's hip hop. They were thrilled to have been taught to whip n nae nae by someone other than their mom.
I am loving the extra hour after school. Shh. revert back to the whole tween crap for reasons for that sentence.
So there's my update. We just had a safe, happy and healthy Halloween.
This all should suffice as our Christmas Card.
|Halloween 2015 Merry Christmas|