We finally have a doctor who is willing to look into Andrew's issues. We have wondered for a very long time if "something else" could be going on with Andrew. We have always been told No. But one thing we knew is that he never fit into his diagnoses. Now, he definetly has Duchenne Muscular Dystrophy (DMD) but his weakness doesn't really fit specifically to that diagnoses. See, DMD first affects the pelvic area and down. But Andrew has always had alot of upper body weakness. That is what we first noticed about Andrew. He wouldn't use his arms and he didn't have alot of head control. DMD would act in the reverse. So now we have a doctor that is agreeing that something else is going on. He doesn't like the fact that Andrew has a very weak neck and arms. It would be extremely rare for a child to have 2 genetic disorders, BUT this doctor is finally saying they are going to have to look into that possibilty. So here is where we stand now. Andrew is going to have a full Austistic screening done. He has some attention issures, sensory issures and some OCD issures so they want to test to see if he may be on the spectrum. Even IF that comes back positive, the DR. agrees that there is something else. He isn't quite sure what yet but is having a meeting in two weeks with a bunch of his collegues and Andrew will be on the top of his list of kids to talk about. We are going back to Philly in 4 months. In the meantime if any testing comes up, I will keep you all posted. We are excited to have finally found a Dr. that is listening to our concerns but also we feel like we've been hit by a truck. We just want answers. If you can say a prayer for Andrew, that would mean the world to us! Thank you for all your support!
Crazy, you ask? Yep! We did it! It was so much fun! Here is a picture of the start of our adventure! Leaving the hotel!
We stopped at Toys R Us and went on the indoor Ferris Wheel! That was so much fun!
We then went to Radio City Music Hall to see the Christmas Spectacular! That was amazing! If you ever get a chance, GO!
After the show, we went to the M&M store. Julia spent $13 of her $20 on the smallest bag of M&M's. Things were VERY marked up there but the kids had fun. We then crossed the street and went to the Hershey store. (my personal favorite!)
After a fun adventure we decided to head back to the hotel. Once we found Port Authority, we found our bus... Bye Bye New York City!
Usually I only post when I have pictures to post. But it has come to my attention, thanks Dad, that he wants me to post more frequent! I will try my best to keep the blog updated even if I have no pictures to post! I have finished packing for our trip. The car is packed and now I just wait until the kids get home from school. I am doing some last minute cleaning before we leave. I think it's so much nicer coming home to a clean house rather than a messy one! I don't think I will have a chance to post about NYC of our trip to CHOP until I get back! Wish us luck and that the Dr.'s think Andrew is doing well and not declining!
After Julia had her friends party from 1-3, we had a few hours to rest and then we had her family party at 6pm. She wanted a heart cake with pink, blue and purple! Her favorite gifts were her lipstick and nail polish and her footy PJ's.
We had a fun time! It's always a crazy day when it's on a school day. The kids got home from school and we got them dressed and off to Nana and Gramps house we went. We were there all of 10 minutes and then we went to see Grandma! Then we rushed home, ate dinner and the kids went with Dad to trick or treat! I stayed home and handed out candy and started making cupcakes for Julia's kid party the next day and her birthday cake for the family party the next night!
We always have a great time carving out pumpkins! This year we cut back and only got one! Gotta love the economy! Anyway, it was so funny this year. The girls usually don't like scooping out the inside of the pumpkin but this year, they loved it! Even Andrew was saying, "gross"! It turned out good but it looked like a chubby pumpkin!
I find it so hard to believe that Julia is 6! Where has the time gone? On her actual Birthday, we just hung out at home after school. She wanted "breakfast" for dinner so we made pancakes with strawberries and whip cream, bacon, eggs! Grandma came up to help us celebrate! We had Oreo pie as a "cake"! She loved it! She also loved the snow we got that night!