Wednesday, November 30, 2016

Time for bed

Busy day today.
Just a normal busy morning with the feed and medication schedules. Mommy was working on figuring out where other kids were with some of their subjects in school, so the morning went by quickly. We had a 2:00 appointment in Dunkirk with the cardiologist and some blood work - between the two items it lasted 2 hours. Add 2 hours of travel time and a stop at the pharmacy on the way home, and we were gone for most of the afternoon. With 4 hours away from home, we got to try our hand at carting oxygen and feeding supplies with us, and keeping his feeds going on the road. 

Dr. Orie was glad to see Timmy and was really happy with how he looked, his EKG, his echocardiogram, and his weight. It means he is pretty well balanced now and in a good place. It doesn't change his diagnosis, but it means he is healthy, at least on his scale. By normal standards, he is still a very sick boy. He told us the team up in Rochester would probably be asking him how Timmy is doing when they conference tomorrow. He told us they all love talking about Timmy and how much they all enjoy our family. We are glad that Timmy has been able to bring joy to so many different people, and glad that he is once again spreading more of that joy at home with his brothers and sisters.

It looks like we may have next month off from Timmy having any doctor's appointments. It seems strange to go so long, when he spent 8 weeks living with a doctor always near by, but it will be nice to go a month if we can.

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