My dad and I took Andrew to the EEG Monday night. By the grace of God it was completed and we should get results soon. We hope and pray that he is not having any seizures. The experience was pretty hard. He had 27 electrodes attached to his head and a net to keep them on. He was suppossed to go to sleep but instead decided to tried to pull of the electrodes. I had to hold him down while he was screaming until he fell asleep. Not fun! It was definitely hard for Dandy (my dad). I called to see when we get results and they will not give them to us until we schedule an aptmt. Can you believe the run around we get? Easter Seals seems to be giving me a hard time too. At first they wanted to offer us a different OT and now they are sayng that they do not duplicate services so they would discontinue services from them. I feel torn with so many different options, weighing them, insurance, co-pays, ......once again making me stressed and crazy. I feel like I am constantly analyzing and wondering if I am making the right decisions for him. It's hard! I wish there was a clear answer. I have thought about contacting an advocate. Maybe someone who could give me more insight on Easter Seals and what they are suppossed to provide by law. I am praying for the best therapists who have a desire to help him. Wow-this situation is so much bigger than us.
A couple of things that have changed with Drew-Drew lately are his picky eating habbits. We noticed this about a month after the GFCF diet change. He hates red pasta's, but will eat tomatoes. He also cries now when he falls, most of the time. This was hard in the past because we knew he fell hard enough that he bruised but wouldn't cry at all. Scary! We are looking forward to more changes with him.
Please pray for us as we try to make the right decisions and are constantly worried that we have made the wrong ones.
Rett Syndrome. One year Post Surgery
3 months ago