Thursday, May 8, 2008
Where we are right now
Heck of a 24 hrs here at the Needham's. Zoey had a pretty restless night after her seizure last evening. She managed to string 2 1/2 hrs together early this morning, thank goodness. Her body is so spent. It is so very heart wrenching to see. We spoke to her neurologist this morning and we are in agreement that probably what we are seeing are tonic seizures. Feel free to google it. It's not pretty. These are nothing like what we saw with Infantile Spasms. Way scarier! Our plan of attack is this... We will see him next week for ANOTHER EEG. Never dreamed we would be having one again so soon. So we will see what that shows and go from there. In the mean time he is reducing her ACTH again with the plan to be finished with that a week from friday. The plan this morning was to pick up another anti-epileptic medication, Topamax, to have on hand in case we saw another tonic seizure and unfortunately she had another one a little bit ago. So we will start Topamax tonight. I am in complete and utter disbelief that we are dealing with such a major crisis this soon. That SHE is dealing with another major crisis so soon. The really sad thing about these types are that afterwards she cries a cry we have never heard before. A help me I'm scared kind of cry. It absolutely breaks my heart. Totally and absolutely. So, this afternoon we start yet another drug to the ever growing list of unnatural substances placed into my 14 month old babies body and I have no other choice but to accept it and move on. I am not as scared yet, as I was when she began her seizure disorder in February. I feel more prepared and more educated, unfortunately. I feel bitter though. Like I lose a little piece of myself each and every time we are faced with a new challenge. I feel angry at God. A feeling and place I have dwelled in far too much over the last year. Faith and hope feel a bit elusive at this moment. But I will do as I have done so many times on this journey. I will continue forward for the sake of Zoey and the rest of my children. They are the only reason I have not crawled back to bed everyday and pulled the covers over my head, never to be heard from again. I go foward because I have to.