So in April, Emersyn had a "silent" seizure (called an atonic seizure). Her muscles didn't tighten. She made no sound. But her eyes shifted to the left (or right, I can't remember). We were terrified, the kids were so scared, but acted bravely and lovingly. But here I am, NOW, reading a book about children with brain damage and I come to the appendix about detoxing from anti-convulsants...
Okay, this next part is HUGE, because God doesn't make mistakes. He doesn't give us things like diarrhea, coughing and puking by mistake. These reactions are protecting an organ or bodily function, just like seizures were meant for a purpose. As horrifying and terrible as seizures are, they actually serve a purpose. IMAGINE that!!!
"A seizure is an activity of great metabolic activity of the brain, and during its presence cerebra blood flow increases, providing more oxygen and glucose and increasing excitatory amino acids necessary for establishing the neuronol wiring and function."
So what this therapist says who wrote the book, is that doctors have made parents fear seizures and if we work on building her cerebral cortex they will be fewer and fewer, but to NOT use anti seizure meds because they hinder healing!
So since the seizure, Emmy has gone from having barely any trunk control to sitting almost all day by herself on the floor (floor sitting makes her use way more muscles). Her speech is clearer and more audible. She can roll over in the crawl position and even crawl about 2 feet.
She is almost back to where she was in August when we left CHKD except she is unable to write and her right leg still wants to be lazy while walking. Another crazy thing we did was quit therapy, ALL OF THEM. She cried every session and I felt like screaming because I work her so much harder at home. So I took this book and am applying the techniques by keeping her on the floor most of the day and making her try to walk the stairs or use the walker, even through it is HARD!
She has had headaches since quitting therapy, but they seem fewer and less sever. She still has had them (especially on Fridays), but quickly giving her a motrin and quiet time, they seem to go away. We have had no nausea either!!! The thing that we can't get over is the lack of sleep she is having. We don't sleep. She doesn't sleep. And we are MISERABLE. I am learning to just let her cry because I become a beast with no sleep. She did say I don't love her because I won't sleep with her. She is a wordsmith and can make you feel terrible, but we refuse to keep drugging her up to sleep. Which leads me to the next issue, medicine.
I was watching a video on a man who gave his son hemp oil. His son was on 22 meds at 7 years old and had seizures all day long. The oil stopped them instantly. No, we don't need hemp oil, we have Frankincense, but he did mention benzodiazepines and how difficult they are to wean. So low and behold, Emmy is on one, Clonazepam. Needless to say, she is now being weaned, which is probably why she is having a hard time sleeping. These meds are very addictive. This specific one helps relax the muscles and can be an anti-convulsant. Well, she hasn't had any more seizures and as far as I know, seizures help the brain more than trying to block them. So we will slowly wean her and increase the amount of Frankincense we give her. That stuff is like GOLD!
So as this weekend rolls to an end, I just need to say Thank you Jesus!! We actually made it 10 days without the help of Ella and Eli!! Those two went and had a mini-vacation with their cousins in Maryland and had a blast! Eli even won an iPad air from one of those arcade games! All I know is that I realized how blessed we are to be able to homeschool and spend so much time with our kids. Emmy and Everett missed those two even more than Randy and I did!!!
I will try to post sooner, but time is limited and this one post took me a week to write!
Thanks for praying and still lifting Emmy up in prayer. She has a LLLLLOOOONNNNGGGG road ahead of her!
Quick Update: She opened a door today with a regular doorknob! She hasn't done this in MONTHS! This kind of strength and coordination has been very hard to get back, but she did it today over and over and over!!! PTL
We spent the majority of our time at VBS with the baby animals...of course!
