Sunday, April 12, 2015

First doctor visit

We took Simon into the Pediatrician and Cardiologist. They both had similar things to say about Simon's overall health. "He looks really good." I can't tell you how nice it is to hear that about your new child and especially one that could follow in the footsteps of two of his brothers and have a very short life.

The Pediatrician did an overall check and ran some blood tests. We still don't have any news on the blood work but I would assume this doctor would call if there was an issue. Simon is in the 3rd percentile in weight and 10th in height. We haven't seen any weight gain in the 5 weeks we've had him despite offering high fat junk food. If he eats, it's just a couple bites or some kind of cookie or candy. Slow growth and weight issues with no appetite are part of the heart problem so we aren't surprised at Simon's eating habits.

Our Cardiologist is awesome! He isn't just a good doctor but he is a good friend and encourages and supports us in all our adoption endeavors. After we got home we called to make an appointment. The soonest opening was a month away. I asked the receptionist if he would contact the doctor and ask him if waiting 4 weeks was OK. If so, I was fine with it. The receptionist called back the next day with an appointment for the day after. We did an echo cardiogram and x-rays. From there we saw the doctor. We now have two possible options for Simon's treatment. The first option is he continues on the course he is on and gets the next stage surgery in the next year or so. At the age of 17-18 he would need to go on the heart transplant list. The second option was so unexpected and "out there" that it couldn't have even entered our thoughts. There is a possibility that Simon could have his heart repaired, not just have another "band aid" surgery. We need to do an MRI and another echo to make a final determination but there is hope that they could go into his heart and separate the chambers and single valve. There would also need to be some plumbing changes. If this were to happen Simon wouldn't need any more surgeries and he would have a full life expectancy. This is a miracle we don't want to get too set on, but it's hard not to have hope for a normal life for a little boy with such a special spirit. The tests are scheduled for April 29th.

Simon had to wear a heart monitor for 24 hours so record heart patterns during different activities.  He was pretty proud of it.  He even help stick on the leads


  1. What good news!!!! I'm excited for you.
    I remember Mark wearing a monitor similar to that when he was a new born.

  2. Oh my gosh; he is just so adorable. I excited about the good news. I will have him in my prayers that he will be able to have the surgery. It is so amazing what they can do today. As always I love following your blog and of course love you all! Hugs!!