Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Sunday, November 6, 2011

Day 12 Post MGH / 25 Post Inova - Last Day of Valium

Trey kept everything down again today!  He had his last dose of Valium this morning and that's the last dose he'll receive.  Hopefully he'll do ok tomorrow - that is when it will hit his system that he isn't getting anymore.  I think he'll do ok though.

We spent most of today watching Football.  Grandma and Grandpa came to visit and to bring Bryce home.  Both Trey and Cole were happy to see them.  Then Bryce went to a birthday party.  Nana and Grandaddy came over and watched Trey and Cole while David and I went to a local restaurant.  It was the first time we were able to go out alone since August.  It was nice and dinner was good.  It was a greek tapas style restaurant and we had some good plates to share.

Trey really hasn't taken his bottles lately.  I was able to get him to take 50 mL from his bottle during his afternoon feed but he wasn't interested in eating from the bottle for the most part again today.  I don't know exactly how we're going to wean him off of the feeding tube.  Eventually it has to come out!  I guess I'll talk to the Gastro dr. next week to figure that out.  Next Thursday we have an appointment with the cardiologist and then next Friday is the Gastro. dr.

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