A life less lived

The TriState Fundraiser was amazing. My inlaws and sister inlaw came up from North Carolina. My parents attended as well. I was so impressed by the size of the turn out. Six hundred and fifty people. The auction was great and I danced for the first time in I don't know how long. My Dad cried the entire night. The most sensitive construction worker I've ever seen.It was kind of strange seeing Aiden's picture come up on the screen during the slide show. He has WS and we were surrounded by family and friends that understand. I cried during Rob's speech. He mentioned the therapy sessions and doctor appointments that Julia and Jill have to deal with and it just hit me hard. They get it! I left there with a smile, the food was great, the evening was fun and so much money was raised to help the WSA.

Aiden's much loved cardiologist is leaving Schneider's hospital and going to CHOP. We met with a new Dr. from the cardiology department last week. Aiden cried the entire time we were there. After a very unsuccessful echo she recommended doing a sedated echo. This will be our first and I'm a wreck. The cardiology visits are hard enough and now we have to be admitted, have him fast, and then the ordeal of finding a vein for the I.V. The last time they tried to place an I.V. they had to stick him ten times (three people tried and failed) . My poor little guy. To make matters worse I went online and read about all the complications, rare as they might be, that are associated with the type of sedation they use. Some days I feel like we have a normal family and then days like today kick me in the butt. I had to schedule the sedated echo, reschedule our endocrinology appointment and ran into his OT in a local store. I took him to our very first mommy and me class on Tuesday. He did so great. Played with all the toys, sat through most of circle time, ate his snack at the table with the other kids. I really had to fight hard not to cry . I was so overwhelmed by how far he has come and how much he has had to go through. the other parents have no clue how hard my little guy has worked to be sitting at that snack table with there kids. Hopefully the class will continue to be a big hit with him. The sedated echo is on the same day as our class (tuesdays). I will have to pull him out before snack time on that day to drive to the hospital and have the procedure done. How many of the other moms will ever have to do that?  All in all I take what is thrown my way as it comes. Each day we love Aiden for Aiden and Autumn for Autumn. Looking forward to meeting the other families at the fundraiser this week and my much needed ,greatly earned birthday weekend away from the kids next week.