Jess's last visit to the cardiologist was in March, she had a sedated echo done along with all the typical tests they do. Everything went well; she tolerated the tests just fine. We have been waiting all this time to hear back from them, letting us know what they want to do regarding when to do the surgery. We finally got the call last week... They think Jess would have better odds at surviving the surgery if they put it off until she is around 4 years old. We asked a bunch of questions and just feel unsettled about the whole thing, so we have decided to seek a second opinion from Boston Children's Hospital and a third opinion from Children's Hospital of Philly. We have gotten the OK from the insurance company and so far Rochester is cooperating with signing over the test results. Once we get them we can send them off to the hospitals and wait for their opinions. If they agree with Rochester, we will feel re-assured. If they say something different, then we will be even more confused as we are right now.
Jess is doing good though over all. She is growing and eating just fine. Not showing any signs of being in heart failure. She is progressing fine with her PT and OT, at least I think so anyway. I just wish so bad they could see in her what I see. She is happy, strong and more determined than the rest of us could ever hope to be.
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Hi my beautiful girl...this is Nana...lalalalala. Jess always smiles when I say that to her and when Jess smiles it lights up our entire world! We love you and your big brother Joey so very much. You are both such special blessings. God certainly knew what He was doing when He gave you your parents. Stay strong Jess...I know you will. Lalalalalala.....love from Nana
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