May?? uggh hate that i have let it get that long. I keep saying..every day since the last post...."
I will post tomorrow." obviously that has not happened.
When I came and looked at the blog tonight I now know why it has been so long. I have mostly written about hard, bad times. That was easy for me. It was my release.
I know it's cliche, but I truly believe no one can truly understand. probably most of my Doose mommas,and my cook epilepsy mommas, but no one can truly understand what hundreds of seizures a day really feels like. The trips to the er, the not knowing when another one will come, the feeling guilty for having to ask any someone to help with another Dr. visit, er outing, or car pool. Thge anxiety it has created is like no other.
So those were the hard, bad times, right? Now, looking at this page, hearing the music, it takes me back. I have avoided it on purpose. I often wonder who I was before it all . What i used to be like? Did I worry 24/7, not sleep at night, like I do now? Was I a nervous nelly? Did I stress and over think every little moment of the day? Did I every let loose and relax, as I can't seem to do now?
Jake's doing well. he's doing VERY well. and quite frankly i don't want to jinx it by writing about it. He is doing great, so great, even writing the words brings tears to my eyes.
his last seizure on Thanksgiving Day 2010!!
so we will travel to Cook Children's in November for an EEG. If the EEg looks good, Jake will start a med wean.
Crap...talk about worry!!! i am so very excited at the thought of one less drug, but of all the drugs, approx 10, he has tried I know Depakote had worked for him. so Depakote would be the first wean. the reasoning is because Dr., H believes, as do I, depajkote is the reason behind his constant tremoring hands, severe adhd, and lack of focus.
If that wean goes ok, assuming eeg is clear, we will then go back to cook Childrensfor another eeg and another wean.
I ,honestly, i have not been myself in 3 years in regards to anxiety...just waiting, not sleeping, watching baby monitors, making sure he isn't too hot, too tired, too hungry. I can only imagine it is going to be a million times worse in months to come.
Rather, I hope hope it becomes worse, as that means his eeg is looking good and we are detoxing our baby of these drugs! I Will just need more drugs.:)
Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Matthew 6:25-27
