Cully had his tests today and came home to a long nap. He is continuing to have more and more seizures. His Vigabatrin dose was recently increased and we have seen nothing of an improvement and actually it appears that things are worsening.Today they made another rather quick increase in his meds in another attempt to stop the seizures.
Seizures are more bothersome to Cully and his demeanor is changing. It seems we have reached that point when these seizures are making their changes to our boy. Not a drastic change from black to white but enough to make me realize that this IS is taking some of him. At first I just could not grasp how such a simple little tiny twitch could take over but I am watching this thing grow into just what we had learned it to be in the beginning . Some of these seizures now fade away with a little boy who is disconnected and in another world. His reaction to a touch or our words is faint or non existent and all we can do is wait for the next one to come while we change this or add that to see if we might get lucky to find the secret to saving Cully. With each increase in the Vigabatrin we near the end of the treatment. There are not many treatments for us to rely on.
This evening we made a family trek to the playground where we had a little picnic and tossed a football, played on the field and watched for birds and airplanes. And tonight Elora is having a sleepover in Sawyers room which will no doubt be filled with giggles and playing long after lights out.
And me? Tonight I will fuel the fire to all the straight and narrow while I sit here in my office with an exhausted 44 year old body, a cluttered mind, endless battle with the finances and a bottle of scotch. A sip here and there while I page through the short list of information online regarding IS and the posts left by each of the families who are in this horrible position just like us. I just wish there was one family near by that we could sit with and not feel like we are so alone in this.
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