Alex and Maddy

Alex and Maddy

Wednesday, October 10, 2007

Hi Everyone!

As most of you know we spent last week in Disney World. We had such an incredible time. Alex loved the characters adn rode all the rides and saw many shows. As he told us many times, his favorite ride was the monorail!!! He loved the dumbo ride, the jungle cruise, the safari, the train. Pretty much all of it. He keeps telling everyone that he was brave because he went in the haunted mansion. Overall, it was just a really fun time. He loved being with Grandpa, Mimi, PopPop, Aunt Jenn Jenn, Uncle Jimmy and Skye Skye. So thanks Grandpa for the best vacation we've had in a while. It sure beats Cincinnati!​
We got home Sunday and Alex and I both have colds. Alex has a fever, but seems okay otherwise. We had a great therapy evaluation on Monday. Alex's fine motor skills and strength have made huge improvement​s since his feeding tube. He still has some stuff he needs to work on. Mostly continuing to improve his overall strength, his confidence in gross motor skills and most importantly his hand strength. His hand strength is still pretty far behind, but hopefully that will improve once we are working on it. Alex was so happy to see Miss Elizabeth. He loves therapy. He has already asked me a few times when he can go back. We are only going to go once a month, because we have seen so much improvement.

Alex had his weight check yesterday. He still hasn't gotten any taller so we are keeping our fingers crossed. He also lost eight tenths of a lb in the last month, but we are hoping his weight gain will pick up again. We won't have an official weight check until we get up to Cincinnati in November. At that point we'll let them decide what they want to do. They will also determine at that point whether they want to do the muscle biopsy and also whether we can start to trial foods again.

We are excited for our trip to Cincinnati. We are flying out with our good friends Tricia and Andrew. Andrew has the same disorder as Alex and has an appt the same day. We will also meet up with our friends Janette and Monty out there.

Overa​ll, things continue to go well. As soon as I have our pictures back I will upload a few.


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