The Journey We Are On.....

This morning we all got up early and headed to the hospital for Ethan's second EEG and appointments with the Neurologist and the GI. Ethan did not do as well getting ready and during the EEG. The preparation process, which includes attaching over 20 electrodes to his head was extremely traumatizing to our little boy today. He was so upset and there was nothing we could do to help him. After the prep work was done he needed to go to sleep for the test. Thankfully Jeff was able to lay down next to Ethan on the bed to try to soothe him and get him to sleep. Ethan probably cried for 20 minutes. He was so upset. It broke my heart. He finally fell asleep but stirred several times during the 30 minute "sleeping" portion of the test before waking up for good. He woke up crying and continued to do so through the 10 minutes of the awake test which has him looking at very bright flashing lights. I'm not sure Ethan even opened his eyes for this part because he was so upset. Aft...

I haven't written in a while. I tend not to write when things get crazy around here. After a somewhat quiet June, July started in a way we had not expected. On Tuesday, July 1st I took Ethan to STEPS. Ethan seemed very happy to be back at school. I mentioned to his teachers that we had noticed that Ethan was loosing his balance a lot and sometimes lost control of his head. Jeff and I had been noticing this for several weeks and while we were very worried that it was most likely a symptom of the progression of PBD-ZSD we knew that if this was the case there was nothing we could do to stop it. PBD-ZSD is a form of leukodystrophy, and at this time science/medicine has not found a way for us to stop the loss/damage of the brain's white matter. We also knew that we'd be seeing several of the top PBD-ZSD specialists in North America at the end of July, so we didn't feel that this warranted an appointment with our "local" neurologist at this time. Although Ethan ha...