Family Advocacy Days

http://childrenshospitals.typepad.com/2011allstars/2011/07/meet-thomas-k-parma-oh.html

This will be Thomas' card...like a baseball card that we can hand out to politicians (just in case he doesn't feel like talking).
Thomas and I are getting excited about visiting Washington DC for Family Advocacy Days. Along with patients from other children's hospitals around the country, Thomas and I will be telling our representatives about the importance of children's hospitals!
We know first hand how aggravating and helpless a parent feels when they are not getting answers or the help that they (and their child) not only need but deserves. The first few months after Thomas failed newborn hearing test were a whirlwind of misdiagnosis and needless tests. Not until we arrived at Rainbow did we start getting answers and the ball rolling for Thomas to get hearing aids and eventual cochlear implants.
Although I'm nervous about meeting our reps.... I know how important Children's hospitals are and I'm willing to speak up for them!!!
I'm hoping to take alot of pictures and will be bringing a notebook with me to jot down little notes and update my blog when I get home. I wish I had a phone that had fast internet access..but I don't!

Summer

We've been enjoying our summer. We try to work on academics a little bit everyday and I've been trying to prepare myself to go out and buy Thomas his school uniforms. I can't believe he will be in school all day in just a few months. I'm going to miss my little buddy. We had his Meet the Teacher night a few weeks ago. She seems very nice and Thomas' best little buddy from preschool is in his class....YEAH! On our way out the assistant principal stopped to say Hi and to let us know that he has been talking with Thomas TOD and educational audiologist (he's had the same since he turned 3 and entered into the our local school district) ~ they will remain part of Thomas' support team at his new school...YEAHHHH! I am SOOO happy!! All of his equipment (batteries, FM system,etc) have been ordered and we are going to set up a date for some of the school personnel, his teacher, myself, assistant principal, TOD and Ed Audi to get together for training! We will also be doing a walk through his classroom to see if there are any changes that need to be made to help Thomas out a bit.
Besides that...Thomas and I have been asked by Rainbows to accompany them to this.... http://www.childrenshospitals.net/AM/Template.cfm?Template=/CustomSource/Calendar/ConferenceDescription.cfm&section=Event_Calendar2&Meeting=2465500_11
I'm pretty excited (and a little nervous) about it ~ I think this will be an experience of a lifetime for both of us. I agreed to it a few months ago and last month a few personal conflicts arose and I wasn't sure that we would be able to go. Jonathan was supposed to come along but I think he will be staying home with my Mom. We were also going to arrive a few days early and stay with my Aunt and Uncle in Fredericksburg...but I think those plans will have to change too! I will be bringing my camera and I hope to come home with some good stories, priceless memories and great pictures!