The Journey We Are On.....

This afternoon Ethan had his first "official" outpatient physical therapy sessions. Now that he has started preschool he will have PT at school but we know that he will need the extra help/support that he will get through weekly outpatient therapy in addition to what he will receive at school. We are also glad that we will be able to continue working with Ethan's PT, Lindy, who has been with Ethan since he started the STEPS program in August 2012. It is great that she knows Ethan, has been working with him a while, and she can help his school PT understand more about Ethan -- what works, what hasn't, his strengths, what he continues to struggle with, etc. and they will be coordinating in some ways to make sure that we are all working to help Ethan reach new gross motor milestones. Today was Ethan's first day using the parallel bars. He had a great session. This boy really wants to walk, although I am pretty sure that once he gets the hang of it he will be runn...

First, I have to admit that early in this journey I wasn't sure that we would ever see this day. Ethan's preschool experience isn't anything like most preschoolers, but we are here. We made it! It was a very emotional morning for Ethan. Ethan cried ALOT! Jeff took a half day to be with us. Ethan has to wear a helmet at school because he falls over frequently due to his seizures. We just got the helmet on Friday so it is going to take a while for him to get used to it.   We met his teacher and the teacher aids for the room and the PT, SLP and Nurse also stopped by to say hello. Ethan will be receiving PT, OT, Speech & Feeding, Hearing, and Vision services at school. Hopefully these will start next week. Once the therapies begin he will have a lot more structure to his morning, which will be good. The teacher also began collecting the data needed to prove that Ethan needs a one-on-one aid. Today there were 4 kids in his class but by the end of September there will...

Our family has been looking forward to the 2013 GFPD Family & Scientific Conference since we left the 2012 conference. It is the one week out of the year we get to spend surrounded by other families who "get it" and understand this diagnosis/journey/life. We are blessed that in addition to families who have been forever changed because of PBD-ZSD, many of the top PBD-ZSD specialists from North America attend and get a chance to present their research, share what they have been doing the past year, what they are hoping to do in the next year and interact with our families! These specialists are truly "our doctors/scientists" and we love them and consider them part of our GFPD family. Our GFPD family has also expanded in the last couple of years to include some amazing ladies who Thursday, July 24th We left our house at 6 o'clock in the morning for the journey west. Ethan did amazingly well, all things considered. We arrived in Lincoln, NE around 3:30pm. Af...