A life less lived

Wow it was easier than I thought it would be. My very first slideshow!! I love my babies.

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.

I've been meaning to add to my blog for weeks now. I love reading other people's but don't take the time to write in mine. I do find it therapeutic . I am so excited about the upcoming WS fundraiser. It will be nice to be out without the kids! It will also be nice to be surrounded by people who support the WSA and families with WS. We were lucky enough to meet five other families from New York this weekend. Rob and Jill had a few families over. Aiden had two little friends. They were only six months older then him. We also met Susan (an adult with WS) who will be singing at the fundraiser.  I really enjoyed talking with her and her mom. It really did feel like one big family. I haven't been to a convention yet so this was the largest group of people with WS I have met. Rob and Jill had a delicious lunch and all the kids and siblings had fun. Aiden continues to plug along with all of his therapies. He has started to self feed alot more recently and today was chattering non stop. It was funny how much he had to say ( most of which no one could understand but who cares). We saw an endocrinologist last week. I want to make sure someone is following his growth or lack there of. The endo was not worried and said to come back in six months. I'm not in any kind of rush to start hormone shots daily so I was happy with the visit. The Dr. even made me laugh when he called Aiden " a giant amoungst the short stature kids". What he meant was that he does not consider a toddler to be of short stature unless he is under the 3rd percentile and our GIANT is in the 4th percentile! We love the little guy none the less. It's kind of nice still being able to carry him and snuggle with him the way we do. His small size has advantages. I get to have my baby alot longer than I remember my daughter being.

Who knew that two adorable little kids could turn into coughing oozing mucus machines??