July 4th Weekend

Audrey is doing great and had a good 4th of July weekend at home. She is continuing to eat really well and sleep even better. We are usually waking her every 3 hours to eat except for the 10pm-12am timeframe in which she tends to be wide awake and ravenous. We have adjusted the two medications to be on an identical 4 times-a-day interval to simplify things and started actually mixing it in a bottle to give to her rather than directly into her mouth using a syringe. Being that she is premature and still tiny, the pediatricians wanted us to bring her back this upcoming week to make sure that she is continuing to get enough food and growing. Overall, she is really doing great and tolerating her crazy loud two older siblings perfectly.

We were able to take her to see the Roswell fireworks on the 4th. We had to run it by the EP doctors last week to see what they thought because we had read that loud startling noises are a trigger of arrhythmia's for some types of Long QT. They said they thought it would be OK but once we were there it did make Amanda a little more nervous than she expected and she tried to keep Audrey's ears covered as much as possible.

We still await the results of Audrey's DNA testing to find out what exact type of Long QT she has which will clarify a more precise long term treatment plan. That generally takes about 6-8 weeks so we have probably another month or so.

- Mark