Life as a Leach

Hero (noun): a person noted for courageous acts or nobility of character; a person who, in the opinion of others, has special achievements, abilities, or personal qualities and is regarded as a role model or ideal. Dr. Campbell was a true hero to our family and to so many others. He created the VEPTR, the device that has given us 7 wonderful years with Abby. He has been our surgeon through thick and thin and has never given up on Abby, even when things seemed rather hopele ss. I'll never forget the first time we met him. It will be 5 years ago tomorrow that we had decided to go to CHOP to get his opinion on Abby's spine and ribs. We had been told by another orthopedic surgeon to just wait until things started to get bad, and that didn't sit well with me. From the moment Dr. Campbell walked in the room, I knew we were in the presence of a brilliant man. Yet, he was always so humble. I've learned from experience that there are very few humble, br

Our second port day was to Juneau.  Whereas Skagway was a very small town, Juneau is a much bigger city and more industrial.  We got off of our ship and were in the middle of a big shipping port.  We had to get on a shuttle to go to the shopping areas.  There were many more shops and restaurants than in Skagway, but it was also much more urban.  Today's excursion was whale watching.  We used a private tour group again, but it didn't have the same personal feel as in Skagway.  It was a bigger company that had multiple buses, so we kept having different drivers every time we would get on.  The whale watching was interesting and the guide was very knowledgeable. Everyone got snacks and water, which was nice.  The indoor seating area was really great with a nice kind of bar set up so that you could have your camera or binoculars in front of you.  Unfortunately, there wasn't a lot of outdoor seating, so you pretty much had to stand if you wanted to be outside.  There was an

While planning for our cruise, I read quite a bit about the kids' clubs and how they can accommodate kids with special needs.  I saw a lot about kids with autism and cognitive delays and how they can modify things as needed.  Kids have to be potty trained, but even kids in pull-ups can be accommodated at time.  However, I could never find solid information about what they do if the kids have complex medical needs.  In talking to customer service representatives with the special needs department, they said that parents could not stay in kids' clubs.  The only time we were allowed in was during the open house each day for an hour.  I figured I would wait until we were on the ship and talk to someone, which is exactly what I did. I realized quickly that the open houses were unstructured times, and the really fun stuff happened when the parents couldn't be in there.  However, I really needed to be around in case Abby had trouble breathing or got knocked over.  The first cou

Our first port day was in Skagway, and the nice thing about this port is that the shopping district is right at the port.  Everything is within walking distance and is clustered together into a few streets.  Skagway is pretty small, and there were only a few restaurants there.  I guess I expected more from a port town, but we just got a snack at port and ate lunch on the ship anyway.  We let the kids take pictures of the adults and it was hysterical listening to them say, "Smile nicely!"  "Look at the camera!"  "Stand still!" just like we do when we take pictures of them. In Skagway, our excursion was visiting an Ididarod musher and riding a summer sled pulled by Alaskan Huskies.  We booked with a private company instead of going through Disney.  It was significantly cheaper and we read that this excursion allowed a lot more time with the sled dog puppies than the Disney excursion.  Puppy cuddling was of utmost importance to many of the members