Doing Something

Sometimes on this journey it feels like we are just helpless bystanders. Ayden's seizures started at a daily rate over a month ago, I have felt an urgency to get help and answers. We have tried only to find ourselves a bit more unclear about exactly what the problem is. We went to the doctors we have trusted for years and continue to rely on for answers. The problem is no one seems to have any solutions, and yet Ayden keeps seizing. We had been trying another medicine until last week when a rash appeared for a few days straight (google "Onfi rash" to get a glimpse of  our concern). He was quickly weened off and we are waiting for the rash to disappear completely before pairing anything else with his current medicine. Did the medicine help? No, he is still seizing.

So, the good news...We have an MRI scheduled for Wednesday. After the MRI we plan to send the films to two fresh sets of eyes. We will be heading to Milwaukee for a second opinion from another neurosurgeon and neurologist. The sheer relief felt today when we finally had an appointment set, after two weeks of phone calls and records requests, was amazing. There is not much we CAN DO as parents but try to seek more information and recommendations. In preparation for our trip we visited our Parkview PT that has worked with Bub since he was 2. She knew when we came in there was something wrong, and after seizing a few times in the lobby Ayden worked with her as we talked about what has happened since she last saw him in Sept. Her assessment is a crucial piece of data to take with us on the 5th, but the results are not good. Her impression was that Ayden has lost most of the muscle tone and range he had gained by the fall after a summer of therapy. While this may help open a few eyes to the effects of his seizures, it is disheartening to know how hard he worked to get to that point only to have lost it in a few months time. So now we wait, the appts. are set and we need to pray for answers. What is the biggest concern now? The unknown, what if they don't find an answer? I can't imagine ever believing that this current level of seizure activity and regression is ok, normal, or in any way acceptable. There has to be an answer...